tag:blogger.com,1999:blog-64952054445622412732024-02-27T04:13:43.218-05:00That Crazy Crippled Chick"When they all make you feel like a problem girl, remember, you're no problem at all." Rob Thomas, Problem GirlCara Liebowitzhttp://www.blogger.com/profile/11860032209178249016noreply@blogger.comBlogger144125tag:blogger.com,1999:blog-6495205444562241273.post-1253743380389739222017-07-07T21:38:00.001-04:002017-07-07T21:38:28.743-04:00This Is What Happens When You "See the Person, Not the Wheelchair"Any wheelchair user will be able to tell you stories of well meaning able people (or, I suppose, non wheelchair using disabled people) who say "I don't see the wheelchair, I just see the person.", usually while patting themselves on the back for being such good friends to the crippled person. This is bolstered by overly cheery campaigns that urge you to "see the person, not the disability", or "see the ability, not the disability!"<br />
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While it's always vaguely heartening to know that some people are interested in getting to know a person beyond their durable medical equipment, this type of thinking leads to a dangerous myth, the myth that wheelchairs are somehow optional accessories, that they're not really part of a person, and that going without them is a simple matter of will and plucky perseverance. While these thoughts may not be explicitly verbalized, we can see the effects of them all too well in our current political landscape.<br />
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The Senate is trying to pass a bill that, among other things, would decimate Medicaid by <a href="https://www.budget.senate.gov/imo/media/doc/SENATEHEALTHCARE.pdf">cutting billions of dollars</a> from the program over the next several years. States who cannot cover the remainder on their own or through a set amount of money granted to them from the federal government will have to choose between dropping people from coverage or reducing the services it covers. Currently, ONLY Medicaid covers home and community based services (personal care attendants) that allow many disabled people to get out of bed, get dressed, go to the bathroom, and generally live their lives. Medicaid also pays for wheelchairs and other mobility equipment. I've been active with <a href="http://adapt.org/">ADAPT</a> in the last few months, protesting against this bill that will literally kill disabled people when they lose services that allow them to live and be free in the community.<br />
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Tonight, ADAPT protesters in Ohio were <a href="https://www.facebook.com/NationalAdapt/videos/1576806332392226/">flipped out of their wheelchair</a>s and dragged out of the building, with their wheelchairs on the other side of doors locked by police. Something similar happened <a href="http://time.com/4829103/mitch-mcconnell-protest-senate-health-care-bill/">last month in DC</a> as we occupied Senator McConnell's office and the hallway outside. (I say "we" because I was there.). They were still people, sure, but they couldn't go anywhere without their wheelchairs.<br />
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When you "don't see the wheelchair", when you ignore the vital role that wheelchairs play in the lives of people who need them, you are contributing to a culture that literally rips our wheelchairs out from under us, that slashes funding to the programs that allow us to have wheelchairs in the first place and then wonders why we didn't try harder to get a job. Without my wheelchair, I wouldn't be <i>able</i> to work, at least not without exhausting myself and seriously endangering my productivity. My wheelchair has given me the confidence and the ability to live on my own, four hours away from my parents, and work a full time job. And last time I tried, private insurance wouldn't cover a wheelchair for me. Medicaid may be my only hope in the future, as my disabilities change and I need a wheelchair that provides more support than my scooter does now.<br />
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This is what the rhetoric of "don't see the wheelchair" does. It treats wheelchairs as an inconvenience to be moved out of the way in favor of the person. Words are just words, but when words lead to actions like this, words are dangerous.<br />
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So take a good, hard look. See the wheelchair. More than that, see the person, wheelchair and all. Our lives may depend on it.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://scontent-iad3-1.xx.fbcdn.net/v/t1.0-9/17308879_10158618818180413_6954954316587684794_n.jpg?oh=7feadcefa8f9c839aea66adb4d0bad46&oe=59D437A4" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="600" data-original-width="800" height="240" src="https://scontent-iad3-1.xx.fbcdn.net/v/t1.0-9/17308879_10158618818180413_6954954316587684794_n.jpg?oh=7feadcefa8f9c839aea66adb4d0bad46&oe=59D437A4" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A picture of me with Senator Tom Harkin last winter in front of the Capitol building. I'm sitting in my scooter.</td></tr>
</tbody></table>
<br />Cara Liebowitzhttp://www.blogger.com/profile/11860032209178249016noreply@blogger.com6tag:blogger.com,1999:blog-6495205444562241273.post-51949018329121871392017-05-01T20:53:00.003-04:002017-05-01T22:25:54.078-04:00Stop Lying To Me About Accessibility<i style="text-align: center;">Guess who's back, back again, Cara's back, tell a friend! I skipped BADD last year due to overwhelming stress from internships, but I'm back! Welcome to my Blogging Against Disablism Day post for 2017. Hold on to your hats, friends. It's a doozy.</i><br />
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<a alt="Blogging Against Disablism Day logo" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgueOq64ytYHaFMrR67YYZl8UPdMH0wOWOYWvi1W6ebi08hUZ3feNLKLUZO3sBqAr1cMWM31ziwH16uy6T3BoDwL7YAM5eUyE8TxrTb3nIZcMP4Jl83fpS4_AI9bGsFLZfK92DeEo6V5DM/s320/bad02.gif" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgueOq64ytYHaFMrR67YYZl8UPdMH0wOWOYWvi1W6ebi08hUZ3feNLKLUZO3sBqAr1cMWM31ziwH16uy6T3BoDwL7YAM5eUyE8TxrTb3nIZcMP4Jl83fpS4_AI9bGsFLZfK92DeEo6V5DM/s1600/bad02.gif" style="cursor: move;" /></a>Last weekend, my friend Danielle and I celebrated her 25th birthday. Her mother had offered to pay for a hotel room in Manhattan for the two of us for Friday and Saturday nights, with a larger dinner and karaoke celebration with some of our other friends on Saturday evening.<br />
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My first reaction, after accepting Danielle's invitation, was "You made sure the hotel is accessible, right?" Danielle and I are both mobility impaired, and I use a motorized scooter. She replied: "Yup, my mom and I both asked. Feel free to ask a third time." Trusting Danielle, I didn't ask the hotel myself.<br />
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We got to the Roosevelt Hotel late on Friday night, around midnight. We discovered that the main entrance was not accessible and we had to go around the corner to the accessible entrance. The "accessible" entrance was a revolving door flanked by two regular pull doors. To our dismay, the pull doors were locked. Faced with no other option, I attempted to go through the revolving door and got my scooter wedged in the doors. I was only able to free myself with the help of Danielle and some Good Samaritans who recognized the predicament I was in.<br />
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"Did we get an accessible room?" I asked Danielle on the way up to our room. "Well, they didn't have exactly accessible rooms, so I just told them to put a shower chair in the tub." She said. That's fine with me, as I just need room to park my scooter and then I get up, but a wheelchair user who can't walk like I do would have been in trouble. <br />
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The next morning, wanting to shower, we found no trace of the shower chair we'd asked for in our tub. Not only that, the bathroom did not have grab bars, making it nearly impossible and definitely dangerous for me to shower standing up (or even sitting down). We called the front desk (twice) and had to wait for them to bring up the shower chair they had promised us. <br />
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The shower chair was a transfer bench type of shower chair that went over the ledge of the bathtub. However, the legs were too short to reach the floor, forcing us to adjust the chair ourselves as best we could. Even then, the chair was dangerously wobbly, especially for Danielle, who showers facing the spray, as opposed to my method of showering facing away from the spray. Luckily, both of us made it through our showers unscathed.<br />
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By the time we dealt with the shower chair and other predicaments that aren't relevant to this post, it was almost time to head to the restaurant, Cara Mia, for dinner. That's when things got really interesting. Danielle had called ahead to make sure they were accessible, yet when we arrived we were confronted with....a step.<br />
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Puzzled, I asked someone (half yelling from my perch on the sidewalk at the foot of the step) if they had an accessible entrance. "We do." they answered vaguely. "But it's downstairs and people are sitting there." They said "We can carry you up the step." I hemmed and hawed. "That's fine for me." I told them (if it was more than one step I would have never allowed it). "But there's two other wheelchair users coming and their chairs are much heavier than mine, you can't lift them."<br />
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(On a side note, I'm always amazed at people who exclaim "We can carry your chair up the steps!" when faced with a 200+ pound powerchair plus its occupant. Do they think they'll suddenly turn into the Incredible Hulk when they try to lift the chair?)<br />
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Meanwhile, Danielle was on the phone to another one of our friends, explaining the situation. "If we can't get in, we'll go somewhere else." She said. I think that's when the restaurant staff realized they were in imminent danger of losing a 10 person reservation. All of a sudden, a server discovered a portable ramp somewhere and I made it into the restaurant without incident.<br />
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Now, let me pause and backtrack to a year ago, when almost this exact situation had played out. We had made reservations at a restaurant called Mozzarella e Vino. We had called ahead and they had assured us they were accessible. Yet when we got there, there was a flight of steps down into the restaurant. They told us that they usually carry wheelchair users down the steps, and that my scooter didn't count as a wheelchair because it was electric. In that case, we left and went to the restaurant next door, who were more than happy to accommodate us.<br />
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So back to Cara Mia. I texted my other friend who was coming to let her know to ask the staff for the portable ramp when she got there. Apparently, when she asked, the staff gave her a dirty look and only relented when her mother threatened to film the whole incident. And I learned later that when another friend arrived and said he was with Danielle's reservation, the staff flat out lied and said "They're not here, they must have left already." (We were ten people, three of us wheelchair users. There was no way they could have missed us or mixed us up with another party.)<br />
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The restaurant was cramped and waiters kept having to squeeze past my scooter. They very clearly did not want us there. They rushed us through our meal, forgot some of our food, and a man who I can only assume was the manager kept hanging around our table anxiously. We finished up and paid the (over $200) bill. <br />
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And then...nothing happened. I mean that literally. Nothing happened as we sat at our table, ready to go, for over half an hour. We could not leave. In order to make room to put the portable ramp down, the staff had to move some tables, and did not want to make the people sitting there get up for even a few seconds so we could get out. They didn't tell us this, of course, until we asked for the ramp. So we had to sit and wait for strangers to finish their meal so we could leave the restaurant. By the time we finally got out, I was on the verge of a panic attack. We were paying customers who racked up a very nice bill, and we were treated like dog poop on the bottom of someone's shoe, just because we had disabled people in our group.<br />
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(Luckily, the accessible doors were unlocked when we got back to the hotel that night.)<br />
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This was not my first rodeo with restaurant inaccessibility. Longtime readers will remember the <a href="http://thatcrazycrippledchick.blogspot.com/2014/08/an-open-letter-to-jekyll-and-hyde-club.html">Jekyll and Hyde incident</a> a few years ago. But at least we didn't go into that situation having been promised accessibility. All of the incidents above took place in supposedly "accessible" venues. We were lied to multiple times in multiple venues.<br />
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Maybe this makes me a bad activist, but I don't even care anymore if you're not accessible. I'm burned out. It's been 27 years since the ADA and I've been alive and crippled for almost 25 of them. You don't want to make your business accessible? Whatever. I'll take my money elsewhere, and you'll lose the business of the <a href="http://disabilitystatistics.org/reports/acs.cfm?statistic=1">20,940,600<span style="background-color: white; color: #333333; font-family: "helvetica neue" , "helvetica" , "arial" , sans-serif; font-size: 14px;"> </span>Americans that are mobility impaired.</a> Just don't fucking lie to me when I ask if your business is accessible. Be honest, please.<br />
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Let me make something very, very clear. If you have accessible doors that you lock after a certain time, it's not accessibility. If it's "only one step", it's not accessibility. If your solution is to carry wheelchair users down the steps, it's not accessibility. If wheelchair users are literally trapped in your restaurant until other diners finish their meal, it's not accessibility. If your accessibility is conditional, <b>it's not accessibility</b>.<br />
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I am begging you, if you can't be bothered to make your business accessible, just don't lie to me. If you're honest about your inaccessibility, I will thank you politely for the information and go somewhere else. But if you lie to me, you better believe you'll end up on my blog.Cara Liebowitzhttp://www.blogger.com/profile/11860032209178249016noreply@blogger.com1tag:blogger.com,1999:blog-6495205444562241273.post-40649699275387426582017-03-24T16:44:00.000-04:002017-03-24T16:45:40.358-04:00CP Awareness Month 2017: Myths and Facts About Cerebral PalsyIt's Cerebral Palsy Awareness Month! In case you're new here, I have CP! See, now you're aware!<br />
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While I have mixed feelings about the concept of awareness (see my <a href="http://www.rootedinrights.org/why-i-believe-cerebral-palsy-awareness-is-important/">latest blog post</a> for Rooted in Rights), I thought it might be useful to compile some myths and facts about CP. Let me know in the comments if there's any I missed!<br />
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<b>Myth: </b>All people with CP use wheelchairs.<br />
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<b>Fact: </b>Not true at all! Some people with CP can't walk at all, some use mobility aids only for exercise, some walk part time in the community, and others walk with or without mobility aids 100% of the time. All ways of moving around with CP are valid! Personally, I walk without aids inside my home and office, and use two canes, a walker, or a motorized scooter outdoors or in crowded situations.<br />
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<b>Myth: </b>People with CP are "retarded".<br />
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<b>Fact: </b>Though some people with CP have an intellectual disability (formerly called mental retardation), many do not. The statistics I've seen have varied wildly, so I'm not going to cite any statistics, but many people with CP are classified as having "normal" to "above normal" intelligence. Of course, IQ tests are.....less than useful for people with CP who have fine motor impairment and/or communication issues, so that may be why the stats are so varied. (I also believe intelligence is a multifaceted concept that cannot be defined by a test, but that's a topic for another time.)<br />
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<b>Myth: </b>People with CP have slurred speech.<br />
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<b>Fact</b>: Just like everything, this varies wildly from person to person. Some people can't talk and use a communication device. Some people find it very difficult to talk and are hard to understand. Some people only have a little bit of a speech impairment that may get worse when they're tired or stressed (like me). And others have no speech impairment at all. Many people with CP (like myself) have trouble controlling the volume of their voice, because of issues controlling the muscles in their lips, tongue, and throat. I'm not shouting on purpose! I'm just loud and I can't help it.<br />
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<b>Myth: </b>CP can "get better".<br />
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<b>Fact: </b>CP is a lifelong disability caused by brain damage. While therapies and treatments can improve function and improve quality of life, that's not the same as the CP "getting better". Nor is it "better" to walk than to use a wheelchair. Many children with CP are forced into painful and traumatizing treatments, therapies and surgeries at a young age in the hopes of making them "better". This is not okay. Treatment should only be focused on improving quality of life. As an adult, I can now choose what I do to manage my CP and give myself the best quality of life I can have with the resources I have.<br />
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<b>Myth: </b>On the flip side, CP gets worse as you age.<br />
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<b>Fact: </b>Weeeeeeeeell.....*makes wishy washy motion with spastic hand* Yes and no. The actual brain damage does not get worse over time. CP is not a degenerative disability like muscular dystrophy. However, aging and changes in lifestyle can lead to an increase in pain and discomfort, and a loss of function. <br />
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<b>Myth: </b>All people with CP know each other.<br />
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<b>Fact: </b>Do you know all non-disabled people in the world? Yeah, I thought not. This does have a ring of truth to it in that in a small area, a lot of people with CP will end up going to the same doctors, therapists, programs, etc. But just because they have CP does not mean we automatically know each other!<br />
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<b>Myth: </b>People with CP die young.<br />
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<b>Fact: </b>While there are some aspects to CP that can potentially lead to an early death (trouble swallowing, leading to aspiration pneumonia, the potential for infected bedsores for people who can't move very much, the high incidence of epilepsy and hydrocephalus in people with CP), CP in itself does not cause early death. I know tons of people with CP, including several in their 60s and 70s!<br />
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<b>Myth: </b>CP is genetic.<br />
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<b>Fact: </b>CP is not genetic. It's caused by brain damage before, during, or shortly after birth. There are some risk factors, like premature birth, that may be genetic, leading to more than one person with CP in a family (especially with twins), but CP itself is not genetic.<br />
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<b>Myth: </b>CP is contagious.<br />
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<b>Fact: </b> Do I really need to dignify this one with an answer? CP is brain damage. It is not contagious.<br />
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<b>Myth: </b>People with CP can't be sexual.<br />
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<b>Fact: </b> I can tell you that sex is one of the most talked about topics in the Facebook group for people with CP I'm in. People with CP can run the gamut of sexuality, <b>including asexuality</b>. That's not a CP thing. That's a human thing. Just like the rest of the population, some people with CP are more sexual than others.<br />
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<b>Myth: </b>People with CP can't be parents.<br />
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<b>Fact: </b>Not true! There are plenty of CPers (or Ceeps, as we like to call them in my corners of the Internet) who are parents. Check out this hilarious documentary <a href="https://www.youtube.com/watch?v=wSn3r0_VpsE">"We Won't Drop the Baby"</a> to see the experience of two parents with CP.<br />
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<b>Myth: </b>People with CP sit at home all day collecting a check from the government.<br />
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<b>Fact: </b>Some people with CP can work enough to not rely on government benefits like SSI or SSDI. Some people can't. Either way, people with CP do a lot more than just sitting on the couch collecting a check! We go out, we socialize, we travel, we attend concerts, anything that anyone else does!<br />
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<b>Myth: </b>Having CP means your mother used drugs or drank alcohol while she was pregnant.<br />
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<b>Fact: </b>While it's true that drugs and alcohol use in pregnancy can cause fetal brain damage, for the most part that's a separate condition (Fetal Alcohol Syndrome and Fetal Drug Syndrome). CP is more often caused by a lack of oxygen to the brain during birth, or a stroke in infancy.<br />
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<b>Myth: </b>If your child is born with CP, you can file a malpractice suit against the doctor who delivered your child and get a lot of money.<br />
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<b>Fact</b>: Despite what all those law firm commercials would have you believe, not every case of CP is due to doctor negligence. The vast majority of cases of CP aren't anyone's fault - they just happen.<br />
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<b>Myth: </b>CP is a childhood disability.<br />
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<b>Fact: </b>While it's true that CP occurs in childhood, not everyone with CP is a kid. We grow up! And once we turn 21, we lose access to a lot of the services that are important for people with CP to be independent and in charge of our own lives. It's a problem, one that needs to be addressed repeatedly.<br />
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<b>Myth: </b>A person with CP can't understand you when you talk, so you should talk to their parent or caregiver.<br />
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<b>Fact</b>: Absolutely false! Even if someone has an intellectual disability or uses a communication device, they can still understand what you're saying. Talk directly to them, please.<br />
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I could go on and on. Did I miss any myths that you wanted to see addressed? Let me know! I hope that you learned something today and that you'll know to counter those myths with cold, hard, facts the next time you encounter them!Cara Liebowitzhttp://www.blogger.com/profile/11860032209178249016noreply@blogger.com0tag:blogger.com,1999:blog-6495205444562241273.post-16771834760185608722016-09-29T20:08:00.001-04:002016-09-29T20:08:40.655-04:00"Speechless" Review: S1E2 - "N-E-New A-I-AideOn this episode of <i>Speechless</i>, JJ gets a new aide, Maya has an argument with herself, Dylan and Jimmy prank the neighbors, and Ray becomes a PT's bitch. Let's watch <i>Speechless</i>!<br />
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I started to agree with some people this episode that said Maya was too over the top. I didn't feel it so much last episode, maybe because it was the pilot. But if the show continues like this, Maya could get real annoying, real fast. The argument with herself, trying to get the principal to be more hard-ass, was bordering on bizarre. I get that Maya is kind of looking for a fight, because she wants to be a warrior mom for her son. But you never look a gift horse in the mouth! If the principal is willing to give your child the accommodations he needs, you hightail it out of there before she changes her mind! You'd think Maya would have learned that by now.<br />
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(A thought I just had - why is the principal dealing with the accommodations and not the special ed department? Does this school not have a special ed department?)<br />
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At the same time, I know mothers like this. <b>I do!</b> Mothers who will call their disabled children whenever they go anywhere without their parents, freaking out and going "Where are you? What are you doing? Do you need to go to the bathroom?" Or even worse, call their aide and speak directly to them. In this situation, Kenneth should have been acting only as JJ's translator (or re-voicer, as some people with communication disabilities call it) so that HE could talk to his mom.<br />
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I also thought the beginning of the episode, with the life-alert buttons, was weird. Maya gave them a whole speech about having a special needs child who may need medical attention, but we've been given absolutely no indication that JJ is medically fragile. It would have made more sense to say "My son has epilepsy and may have a seizure that requires medical attention." (Not all seizures need medical attention.) Epilepsy IS a very common co-morbid disorder with CP! My fear is that without further context, it might give off the impression that all people with CP are medically fragile. Some are, and there's nothing wrong with that. But it's usually more co-morbid disorders than CP itself, and I don't want this show to give people any wrong impressions about CP.<br />
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All of this is not to say I didn't love this episode! I did! I loved that JJ skipped his PT appointment, even though it wasn't the right thing to do. And Kenneth let him, because ultimately it's JJ's decision. That's a phenomenon called <a href="http://mn.gov/mnddc/parallels2/one/video08/dignityofRisk.html">dignity of risk</a> in special ed/disability circles, and it's super, super important. I was really happy to see the show portray JJ as a regular teenager who might want to break the rules sometimes! Too often, kids with disabilities are portrayed as saintly angels who never do anything wrong, or devils who cause trouble for everyone around them. I loved that this show has never fallen into that trap (so far, please let it continue!).<br />
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And my god, did that lead to the funniest scene of all time. First of all, "We pay for physical therapy. We get physical therapy." is a line I could absolutely see my mom saying. We didn't have much money when I was a kid, so I got all my PT and OT in school, unlike a lot of other kids with disabilities I knew. But if we paid for PT outside of school? You better believe my mom would be trying to make the most out of every penny. <br />
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So, in order to make the most out of every penny, Maya makes Ray go to PT instead, where the PT promptly criticizes his pronated feet and basically tells him to walk heel-toe. It's clear that the <i>Speechless</i> team consulted with either an actual PT or someone who's had extensive experience with PTs in childhood for this scene (I can't help but wonder if Micah Fowler himself contributed a few notes about having extensive PT in childhood). This, in turn, makes Ray so self-conscious that, trying to make himself walk "normally", he weirds out his crush at school. As someone who was constantly trying to show a barrage of doctors and therapists how "well" (i.e. "normally") I could walk as a kid, this scene resonated with me like no other. <br />
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Now, let's talk about what is, in my opinion, the most <i>important</i> scene in the entire episode. During her meeting with the principal, Maya realizes with some horror that Kenneth has taken JJ to the bathroom. She flees to the men's room, where Kenneth and JJ are just finishing up. Now, why is this such an important scene? Let us count the ways...<br />
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<b>1) It's a big step in Maya's growth.</b><br />
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I think this is the moment, more than anything, where Maya realizes that she can <i>let go</i>. She stands in the doorway and she sees and hears that Kenneth has things under control, that JJ isn't going to get hurt if she's not with him every second. It's hard for her to let go, but she's starting to finally realize that she has to if JJ is ever going to grow up and be his own man.<br />
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<b>2) It's a realistic situation.</b><br />
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What I love about <i>Speechless</i>, above all else, is that it doesn't shy away from showing the nitty gritty reality of disability. A lot of kids with CP need help with toileting! It's a thing! Instead of trying to steer around the "uncomfortable" topic, <i>Speechless</i> handles it with humor and grace. When was the last time you saw a character who needs help toileting using the bathroom on a TV series? Never? That's what I thought. It may not seem like much, but to me, this one scene is a HUGE step in representation of disabled people on TV. It's not handled as some uncomfortable, awkward, horrible thing. It's just someone using the bathroom. Kenneth is casual about it and neither he nor JJ seem embarrassed about it. They're just doing what they have to do. It reminded me of countless bathroom trips with the counselors at camp, complete with casual conversation and a few laughs.<br />
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I'd like to address the subplot with Dylan and Jimmy pranking the neighbors, but honestly, it bored me. I didn't like it, I didn't understand it, and I didn't think it was necessary. I know it was supposed to be funny, but it felt annoying and forced, especially the repeated use of variations on "we're idiots". We get it, you're an eccentric family. You don't have to pound it into us., especially not with an ableist term like idiot. I liked the subplot with Dylan and the track team in the first episode, so hopefully this was just a writing fluke and Dylan will get better plots in the future.<br />
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Stay tuned next week for my next review of <i>Speechless</i>!<br />
<br />
<i>If you'd like to support this and other projects, consider <a href="https://www.patreon.com/thatcrazycrippledchick">becoming a patron</a> or contributing to my <a href="http://ko-fi.com/A14437E">Ko-Fi</a>!</i>Cara Liebowitzhttp://www.blogger.com/profile/11860032209178249016noreply@blogger.com1tag:blogger.com,1999:blog-6495205444562241273.post-35855527514138566762016-08-11T15:06:00.000-04:002016-08-11T15:06:11.213-04:00Why are we so angry at Trump for mocking a disabled reporter?Hear me out, here, before you start hating on me for the title.<br />
<br />
In case you've been living under a rock, let me catch you up. Last November, presidential candidate (who is now the official nominee for the Republican Party) Donald Trump <a href="http://www.nbcnews.com/politics/2016-election/new-york-times-slams-donald-trump-after-he-appears-mock-n470016">publicly mocked</a> New York Times reporter Serge Kovaleski, who has arthrogryposis. Trump waved his arms around in a supposed imitation of <a href="https://twitter.com/realDonaldTrump/status/669994161911779329?ref_src=twsrc%5Etfw">"someone groveling to take back a statement made long ago"</a>, however, his actions looked suspiciously like an imitation of the way Kovaleski's arms are positioned due to his disability.<br />
<br />
The story "grew legs", so to speak, and was quickly plastered all over the media. And even though we are faced with a new outrageous Trump story almost daily at this point, this is the story that just won't die. In a <a href="http://www.bloomberg.com/politics/articles/2016-08-10/bloomberg-politics-national-poll">recent poll</a>, more than half of prospective voters were <a href="http://www.nbcnews.com/politics/2016-election/trump-s-worst-offense-mocking-disabled-reporter-poll-finds-n627736">"bothered a lot"</a> (the highest metric of displeasure in the poll) that Trump mocked a disabled reporter. The incident has been the subject of <a href="https://www.youtube.com/watch?v=9QUYQUd0Qh8">two</a> <a href="https://www.youtube.com/watch?v=I1wQ0ToQDtU">PSAs</a> produced by a Clinton super PAC. Several notable figures, including former President Bill Clinton and Senator Tom Harkin, referenced the incident at the Democratic National Convention.<br />
<br />
This isn't the first, nor the last time that Trump has threatened, mocked, and humiliated members of the press. NBC reporter Katy Tur wrote an <a href="http://www.marieclaire.com/politics/a21997/donald-trump-katy-tur/">extensive piece</a> detailing her experiences on the campaign trail and Donald Trump's numerous attempts to insult her and smear her reputation. Donald Trump has insulted numerous other minority groups, calling <a href="https://www.youtube.com/watch?v=Jaz1J0s-cL4">Mexican immigrants</a> "rapists", <a href="http://www.philstar.com/business/2016/08/12/1612471/trump-filipinos-are-terrorists-and-animals">Filipinos</a> "animals", and of course, calling for a <a href="https://www.donaldjtrump.com/press-releases/donald-j.-trump-statement-on-preventing-muslim-immigration">complete shutdown</a> of Muslim immigration to the United States. So why is the mocking of a disabled reporter, a relatively tame incident for Donald Trump, the number one issue that makes voters unhappy with him?<br />
<br />
It's because disabled people are generally seen as the untouchables. We are weak, childlike, unable to defend ourselves. Ironically, Donald Trump <a href="https://www.washingtonpost.com/politics/trumps-plan-to-rehabilitate-his-image-explain-past-controversies/2016/05/17/de2225da-1c37-11e6-b6e0-c53b7ef63b45_story.html">said it himself</a>: "Who would do that to the handicapped?" While he is more than willing to defend - and repeat - his remarks about other minority groups, when it comes to disability, he backtracks. Disability - even in a political campaign as charged as this one - is somewhat taboo. And the nation has risen to the defense of a community that has proven, quite plainly, that we can <a href="http://therespectabilityreport.org/2016/07/25/gov-dannel-malloy-opens-dnc-by-owning-his-own-disabilities/">speak</a> <a href="http://therespectabilityreport.org/2016/07/26/disability-rights-advocate-anastasia-somoza-takes-center-stage-at-dnc/">for</a> <a href="http://therespectabilityreport.org/2016/07/28/giffords-serves-as-role-model-for-people-with-disabilities/">ourselves</a>.<br />
<br />
So let's let Serge Kovaleski go and <a href="http://www.rootedinrights.org/videos/storytellers/storytellers-make-this-election-count/">focus on the real issues</a>. Disabled people don't need defenders. We need access to the durable medical equipment we need to survive. We need healthcare that won't shun us for having pre-existing conditions. And above all, we need civil rights. Everything else is just lip service.Cara Liebowitzhttp://www.blogger.com/profile/11860032209178249016noreply@blogger.com0tag:blogger.com,1999:blog-6495205444562241273.post-40700045962194242672016-03-06T23:24:00.000-05:002016-03-06T23:37:39.074-05:00Disability Is The Overlooked Issue of Flint, Michigan and the Entire Presidential RaceDuring tonight's Democratic debate, the issue of lead in the water in Flint, Michigan took center stage. Both candidates rightfully called for the resignation of Governor Rick Snyder and outlined their plans for repairing the water system and assisting the people of Flint, particularly children, who have been affected by lead poisoning.<br />
<br />
Disability, curiously enough, was not mentioned. Neither was race, for that matter. That was strange, because when you get down to it, Flint is a perfect storm of racism and classism coming together in an insidious storm to create and perpetuate ableism, racism, and classism. <a href="http://www.census.gov/quickfacts/table/PST045215/2629000">Over half of Flint's population is black</a>, and almost half of the population lives below the poverty line.<br />
<br />
And then this happened. Senator Bernie Sanders spoke about meeting a mother whose young daughter was affected by the poisoned water. "Imagine this for a second, imagine a mother who had a bright seven-year-old gregarious girl doing well in school. Two years later, that child is now in special education, intellectual capabilities significantly deteriorated. That is a crime against that child, and the people of Flint."<br />
<br />
Once again, disability was solely used as a prop to illustrate a larger point. Disability is not the crime against the people of Flint. Intellectual disability, whether born or acquired, is not a crime. The crime is that people, mostly marginalized people, are being systematically poisoned, and their government, which is supposed to represent them, is sitting on their hands and humming a merry tune. <br />
<br />
The entire purpose of that story was to impress upon the people the very real consequences that the contaminated water has had for the people of Flint. And that's important to talk about. But disabled people are not a tragedy. We are not your moral lesson, not the bogeyman under your bed. And a statement like that, by a presidential candidate, only contributes to the stigma and fear of disability, in Flint and beyond. The actual word was not said. It didn't need to be. And if it takes a sob story about a disabled person for you to grasp that there is injustice happening, you need to examine your morals a little more closely. Instead of, once again, objectifying disabled people to make non-disabled people feel something, let's ask this:<br />
<br />
<b>Dear presidential candidates, what are you going to do for the newly disabled children of Flint, Michigan?</b> <br />
<br />
Will you dismantle systems (like IQ testing and other standardized tests) that put disabled children of color at a distinct disadvantage because of inherent bias? The case of <a href="http://openjurist.org/793/f2d/969/larry-lucille-p-v-riles-p">Larry Lucille P. v. Riles P.</a> was over thirty years ago, proving that IQ tests are instruments of eugenics that rest on the ableist and racist assumption that children of color are naturally less intelligent than white children. And yet we <i>still</i> use IQ tests as a method of classifying children with intellectual and learning disabilities. <br />
<br />
Will you make sure they get a free, appropriate public education as mandated by the Individuals with Disabilities Education Act? Will you make sure that their parents or guardians have the resources to understand the special education and IEP process and hire independent counsel to represent them and their children if due process is necessary?<br />
<br />
Will you end the school to prison pipeline, which disproportionately affects disabled people of color? Will you make sure that the young black children growing up disabled in Flint will not live in fear of being killed by the police for the sole "crime" of being black and disabled? Freddie Grey was <a href="https://www.washingtonpost.com/local/freddie-grays-life-a-study-in-the-sad-effects-of-lead-paint-on-poor-blacks/2015/04/29/0be898e6-eea8-11e4-8abc-d6aa3bad79dd_story.html">disabled by lead poisoning</a> as a child. We all know how his story ended, a larger example of systemic, environmental racism and ableism coming together to paint a white, able man's hands with blood. What will you do to make sure that the children of Flint don't become the next Freddie Gray, and the next one, and the one after that?<br />
<br />
Will you make sure they can go to college? When they have grown up, will you make sure they are gainfully employed (and not stuck in sheltered workshops that pay pennies as an hourly wage)? If they receieve benefits, will you ensure that they will not lose their healthcare and personal assistance services if they join the working world? Will you work to end the entwined systems of racism, classism, and ableism that will continue to put Flint's children at a disadvantage?<br />
<br />
Disabled people are the largest minority in America. We are a <a href="http://therespectabilityreport.org/2016/03/04/conservatives-missing-massive-voter-opportunity-voters-with-disabilities/">swing group</a>. Yet while the presidential candidates are campaigning furiously for the vote of black and Hispanic people, no one is actively campaigning for the disabled vote. And that's a problem.<br />
<br />
The Respectability Report has done an amazing job of distributing <a href="http://therespectabilityreport.org/2016/02/29/super-tuesday-disability-voter-guide-released-candidates-showcase-huge-differences-in-pwdsvote-2016-questionnaire/">surveys to each presidential candidate</a> on the issues that matter to disabled people. Of the candidates still in the race, both Democratic candidates have responded. In fact, Senator Sanders was the first to respond and the only one to respond in full by the deadline set by the Respectability organization. Of the four Republicans still running, only John Kasich has responded to the survey.<br />
<br />
The Respectability Report is a great start and I salute all those who are working tirelessly to shine a light on the candidates' positions on disability issues. But it is not enough. Disability needs to be an issue all the time, not just when talking to "special" people. <br />
<br />
To the presidential candidates, take notice. Disabled people are tired of being your bogeyman or your punchline. We are waiting to finally become your constituency. Just <a href="http://www.npr.org/sections/13.7/2016/02/25/468073722/disabled-just-saytheword">say the word</a>. We'll be listening.<br />
<br />Cara Liebowitzhttp://www.blogger.com/profile/11860032209178249016noreply@blogger.com2tag:blogger.com,1999:blog-6495205444562241273.post-64332851199675608892016-01-11T23:00:00.000-05:002016-01-11T23:00:32.892-05:00Oops, The Mighty did it again...and again...and again.Remember when I said I was waiting to see what The Mighty would do in the wake of our <a href="http://thatcrazycrippledchick.blogspot.com/2016/01/debriefing-my-phone-call-with-mighty.html">conversation</a>?<br />
<br />
Well, I found out. And it wasn't pretty.<br />
<br />
I told Vicki and Megan during the call that I was planning on posting my demands and guidelines on my blog. They made no attempt to convince me to refrain from that. They were well informed and should not have been taken by surprise.<br />
<br />
So I posted them. And later that night, I got up the courage to post a link to that post in the Mighty Voices Facebook group. I said something along the lines of "I'm probably going to get jumped on by the parents for demanding they write about their kids with respect, so when this hits my breaking point, I'm out of here. Megan and Vicki know where to find me, as do the people in this group who have been willing to listen and learn." I also emphasized that Megan and Vicki were lovely, and that it was many parents in the Mighty Voices group who were nasty and rude to me and other self-advocates.<br />
<br />
Imagine my shock when less than ten minutes later, my post was removed and I was removed from the group, as were many others, mostly self-advocates. The supposed rationale for this culling of the group was as follows, posted by Vicki in the Mighty Voices group AFTER removing people and emailed to all Mighty contributors:<br />
<blockquote class="tr_bq">
<br />Hi everyone,<br /><br />When we first started Mighty Voices, we designed it to be a place for our frequent contributors to connect and collaborate. We will be making changes to Mighty Voices in the next few weeks as our new community manager comes on board. The first of these changes is that we want to return Mighty Voices to what it was designed to be. For this reason, we are removing anyone who hasn't submitted a story for consideration on The Mighty in the last four months.<br /><br />Please know this doesn't make you any less a part of The Mighty. We are so glad you're a part of our community, and we hope you continue to contribute to our site. If you have any questions or concerns, just let me know.<br /><br />Best regards,<br />Vicki Santillano<br />Senior Editor | The Mighty</blockquote>
<br />
Let's say I give The Mighty the benefit of the doubt and take their explanation at face value. What exactly does kicking contributors out of the Facebook group who haven't contributed in four months accomplish? It in no way goes to the root of the problems, not even close. All it does is make the Facebook group easier to manage for <i>them</i>. And as a former Facebook group moderator, I can tell you that when your group is growing, you don't kick people out. You hire more moderators. Hmmm....who suggested that? Oh right, I did.<br />
<br />
Contributors were given <i>no</i> warning before being removed. None. Zero. The explanation came after the fact. There was no chance for anyone to redeem themselves by submitting a post in a timely fashion if they wanted to stay in the group. We were punished for crimes we didn't even know we committed.<br />
<br />
But what angers me the most is the swift removal of my honest post with no explanation whatsoever. Vicki and Megan have done no moderation whatsoever over the past two to three weeks in the cesspool that is the Mighty Voices Facebook group. Now, all of a sudden, it was as if they realized that they should be doing something. But instead of moderating hateful and offensive comments (see below for some samples), they removed a post that I warned them I was going to write, which wasn't even offensive towards them (the worst I called them was lackadasical and naive, if you recall, and I pointed out some perfectly understandable reasons that they might be that way). I don't know whether the blog post itself upset them, whether it was my direct commentary on Facebook accompanying the post, or something else entirely, because once again, I got no explanation, no apology, nothing. <br />
<br />
Meanwhile, posts like this are still up, some in Mighty Voices and some on the main Mighty Facebook page (screenshots posted and described below):<br />
<br />
This was in response to the post by a mother, written under her real name, with a photo of her son, and going into detail about her son's <a href="http://www.donotlink.com/hp9n">bathroom problems</a>:<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCpsZ5VkBVHv5fJF7SyTgEnBQmFg6iRUci5rXSQ-HfJqi4GZPTJ5TvvkEUIpCCV_JY1GVJe9tBLEmYEMkMEhMYvfBWYshawyh6cBxjupdHOJOOgs5a23Qp3hDYJhvWgqkBO01IrgUz6bU/s1600/mighty+screenshot.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCpsZ5VkBVHv5fJF7SyTgEnBQmFg6iRUci5rXSQ-HfJqi4GZPTJ5TvvkEUIpCCV_JY1GVJe9tBLEmYEMkMEhMYvfBWYshawyh6cBxjupdHOJOOgs5a23Qp3hDYJhvWgqkBO01IrgUz6bU/s320/mighty+screenshot.jpg" width="284" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 12.8px;">A partial screenshot of a Facebook thread. Names and profile pictures are blacked out for privacy, with different colors representing the different commentators. The first comment says "Wow tmi I'm glad my parents never posted my bathroom problems to fb". It has ten "likes", All other comments are replies to the original. First one under the original says "It's more than that. Its a story of hope." It has three "likes". Second one says "I'm sorry that all you see in this story is "bathroom problems". Perhaps you need to broaden your perspective a bit to get the real meaning in this story." It has 12 "likes". Next one says "Although it is a great story of a stranger helping someone else, it's embarrassing for her child if and when he does find out mom put the story all over the internet. Kids with Down Syndrome, even in adulthood, have feelings. And if someone pointed out, "Hey, that's the boy from that bathroom story on The Mighty, I'm sure he would be mortified. Even the lowest functioning can get hurt feelings from this. Next comment says "Very true, that's gonna be humiliating for the kid." It has two "likes". Next comment says "There is a bigger picture here people." It has two "likes". Next comment says "Get a grip people! This little boy had Down's Syndrome and Autism and was non verbal! His mother would be more than thrilled if her son COULD read this and be embarrassed! Forget any embarrassment and look at her horrible predicament...being a mother..." The comment is cut off with a "see more" link and has five "likes". Final comment is from the same person who said that it was gonna be humiliating, and says "So what you're saying is that this kid has no right to privacy because of how severe his disabilities are? That's messed up. Every single person has a right to confidentiality no matter what their ability." It has four "likes".<br /><br /></td></tr>
</tbody></table>
<br />
So, in essence, in this thread, we have people saying "People with disabilities have feelings." and other people very nearly literally going "No, they don't."<br />
<br />
This next screenshot was part of a comment thread on an unknown post.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiU46d6VJXuIuRqtZ0wZllp0IzvFRJMeMxJ5Kz9Mb_ncsSpmdcsChUjvCBkUmDNJgQudUSU7alfNOTE8dDSVl_7nrEGpN0aYM-dlc_xi1WD96uSdBBrE5HjziiIQz5pSnz1qAz6vjIVPVk/s1600/mighty+screenshot+edited.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="157" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiU46d6VJXuIuRqtZ0wZllp0IzvFRJMeMxJ5Kz9Mb_ncsSpmdcsChUjvCBkUmDNJgQudUSU7alfNOTE8dDSVl_7nrEGpN0aYM-dlc_xi1WD96uSdBBrE5HjziiIQz5pSnz1qAz6vjIVPVk/s320/mighty+screenshot+edited.png" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 12.8px;">Screenshot of a Facebook comment, with name and profile blacked out for privacy. Comment reads "Disabilities are meant to teach others! To serve, to help, to be humble, to be patient. There is nothing wrong with that. Let disabilities inspire." The reply by Kelly Ford (who gave me her permission to show her name and picture) says "Disability is meant to teach and inspire? Could you perhaps be more clear about this point? My son, myself, and others do not feel our "purpose" in life is to inspire and teach solely on the basis of a disability. Most certainly not as a minor child who will grow up and have a digital caricature of ourselves painted permanently online for the "inspiration" of others. Especially in a narrative we did not choose ourselves. Perhaps I have misunderstood....I apologize in advance if I missed something here. Just looking for clarification."</td></tr>
</tbody></table>
<br />
Apparently, I exist solely to inspire people. Silly me, I thought I existed to live my life. This is a complaint I hear frequently from people with visible disabilities in particular and something I encounter often. When I am getting my coffee or going to class or catching a train...I am not there to educate you. I am not there to inspire you. I am there to get my coffee or go to class or catch a train, just like everyone else. No one else has this expectation placed on them that they must be available to satisfy people's every whim every second of every day. Yet, because we are disabled, it is not only expected of us, it is <i>demanded </i>of it. It becomes our obligation, our job, and we are continually expected to do it for free (which is, of course, one of the problems with The Mighty and other sites, though frankly a small problem in comparison with the rampant ableism and inspiration porn that is becoming clearer on The Mighty by the day).<br />
<br />
These types of posts (and these examples are truly the tip of the iceberg) promote stereotypes and use disabled people as props for the satisfaction of the able. Demeaning, offensive, and frankly dangerous posts are still up....and yet my honest critique of my phone call with the Mighty editors was removed almost as soon as it was put up. It's hard not to suspect ulterior motives here.<br />
<br />
I have to ask Megan and Vicki, <i>what the hell did you think I was going to do</i>? You knew I was going to put my demands and guidelines up on my blog. Did you think I wasn't going to talk about the call itself? Did you think I wasn't going to post it in Mighty Voices? Did you think I was posting it on my blog just for my own amusement? I'm highly confused here.<br />
<br />
Obviously, I wasted my time and my breath trying to educate people, including The Mighty editors. I put in my own time, and did a lot of work both putting together my demands and guidelines, and talking on the phone with The Mighty editors (which, incidentally, is a fairly inaccessible medium for me, because phone calls give me severe anxiety). I did all this for free, when I could have spent that time on far more productive things that could actually make me money. I did all this because I thought there was a chance The Mighty would listen. I am beyond disappointed. I am hurt, enraged, and disgusted. The Mighty did not even have the decency to be honest about their extreme indifference and even antagonism towards disabled people. I would have respected them much more if they had. They pretended to care, and then stabbed us in the back with a flimsy excuse and no apology.<br />
<br />
It's clear that The Mighty does not care. They disrespected me, and they disrespected a lot of other people, both self-advocates and non-disabled parents. I will be asking The Mighty to remove my pieces and my profile from their site. You do not try to silence me, and yet keep my pieces up on your site for the clicks.<br />
<br />
Goodbye, The Mighty. I'm sorry that actual disabled people had the nerve to critique a disability-related site.Cara Liebowitzhttp://www.blogger.com/profile/11860032209178249016noreply@blogger.com8tag:blogger.com,1999:blog-6495205444562241273.post-66113470945570898992016-01-07T14:28:00.002-05:002016-01-07T14:28:13.783-05:00Debriefing my phone call with The Mighty, and where we go from hereI just got off the phone with Megan and Vicki, editors of The Mighty. We had set up this phone call over two weeks ago and I admit, I was skeptical that it was actually going to happen, particularly in light of the news that The Mighty hired a disabled parent of disabled children to manage their Mighty Voices portal (where authors can submit their pieces). It seemed to me like they were putting the cart before the horse, and trying to fix things before they talked to everyone and fully understood where the problems were. So I was pleasantly surprised when I actually received the phone call, right on time, from Megan and Vicki, and just that simple act made me respect The Mighty team much more.<br />
<br />
(For background info on The Mighty controversy, check out the #CrippingtheMighty <a href="https://storify.com/SFdirewolf/crippingthemighty">Storify</a> and this excellent <a href="https://www.washingtonpost.com/lifestyle/style/a-disability-focused-website-ran-a-funny-post-about-autism-outrage-ensued/2016/01/05/366fbd14-b311-11e5-9388-466021d971de_story.html">Washington Post article</a>, in which yours truly is quoted!)<br />
<br />
Megan and Vicki seemed eager to hear my opinions, particularly in reference to potentially sticky situations (authors using language to self-identify, the use of trigger warnings, etc.) I think they were surprised when I told them that I had already drafted a list of demands for The Mighty as well as a list of potential editorial guidelines. I emailed them my lists and they took the time to read through them while on the phone and to ask me to clarify relevant points.<br />
<br />
All in all, throughout this process, I've found Megan and Vicki to be mostly well-intentioned and eager to learn, if a bit naive and somewhat lackadasical, especially when it comes to moderating the cesspool that is the Mighty Voices Facebook group (a private Facebook group for contributors). However, they may simply be overwhelmed. As someone who moderated a Facebook group for over three years, I certainly know the difficulties of moderating, especially when arguments happen and turn nasty. The sheer drain of it was a large part of the reason I stopped moderating and even left the group altogether for a few months.<br />
<br />
In any case, Megan and Vicki have certainly been better than most of the nondisabled parent contributors to The Mighty, many of whom have formed their own blog where they can presumably be free of actual disabled people, who might get in the way of the credo that a child's disability is ALL. ABOUT. THE PARENTS.<br />
<br />
However, a phone call means nothing if it's not followed up with action. Where we go from here is dependent solely on what The Mighty does. I know I'll be watching. I also told Megan and Vicki, point blank, that unless I'm comfortable with the changes, I will not be submitting any more pieces to The Mighty. I doubt that the changes will be so radical as to make me feel comfortable submitting to them again, but I'm not ruling out the possibility of being pleasantly surprised.<br />
<br />
Below are the list of demands I wrote for The Mighty, as well as the editorial guidelines I drafted. Megan and Vicki know that these are being posted in the interest of transparency and accountability. Feel free to chime in in the comments with any demands or guidelines you think should be included.<br />
<br />
<div align="center" class="MsoNormal" style="text-align: center;">
<b>List of Demands for The Mighty<o:p></o:p></b></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoListParagraphCxSpFirst" style="mso-list: l1 level1 lfo1; text-indent: -.25in;">
</div>
<ol>
<li><span style="text-indent: -0.25in;">Publicly
make available all financial records on The Mighty website.</span></li>
<li><span style="text-indent: -0.25in;"> Pay
contributors for their work (suggested rate of $50 per republished article and
$75 per original article). Compensate
writers an extra $25 if their piece is picked up by another website.</span></li>
<li><span style="text-indent: -0.25in;">Establish editorial guidelines for pieces
submitted and encourage contributors to edit their pieces if they do not meet
those guidelines. (Sample editorial
guidelines below)</span></li>
<li><span style="text-indent: -0.25in;">At least half of the Mighty staff should be
people with disabilities, and at least half of those should be people with
disabilities </span><i style="text-indent: -0.25in;">who are not parents</i><span style="text-indent: -0.25in;"> (25%
people with disabilities who are not parents).</span></li>
<li><span style="text-indent: -0.25in;">Specifically hire at least one person (preferably
disabled, can be a disabled parent of disabled children) to review submissions
as they come in and offer editorial feedback.</span></li>
<li><span style="font-size: 7pt; font-stretch: normal; text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">Establish guidelines for what is shared on TM’s
social media pages similar to the editorial guidelines (see I Am Norm’s social
media guidelines).</span></li>
<li><span style="text-indent: -0.25in;">Make the Mighty Voices Facebook group a safe
space by clearly outlining a list of rules (can be similar to editorial
guidelines – no violating children’s privacy (unless it’s specifically stated
that the child has given their permission), no harmful language, trigger
warnings and image descriptions. Establish
a clear list of consequences for breaking the rules (such as a three strike
policy). Specifically hire one disabled
(non-parent) person and one nondisabled person to co-moderate Mighty Voices
group, with potential for more moderators hired as needed. Moderators can refer difficulties to the
editors if things escalate to a point where they no longer feel comfortable
handling it.</span></li>
<li><span style="text-indent: -0.25in;">Establish a peer review process for parents
writing specifically about their disabled children (can be used at the
discretion of the person who is reviewing submissions – obviously a parent’s
experience is going to overlap with their children’s to some extent, but if
they are solely writing about their children, rather than parenting, peer
review is needed). For these types of
pieces, as well as anything that could be controversial, one disabled
(non-parent) person and one nondisabled parent will review the submission and
offer feedback. If one or both of the
reviewers decide that the piece should not be published, the piece must either
be edited to bring it more in line with TM’s guidelines, or rejected
completely. Peer reviewers will be
compensated $25 for their review.</span></li>
<li><span style="text-indent: -0.25in;">Reach out to disabled-run and disability
activism groups such as the Autistic Self Advocacy Network, National Council on
Disability, etc. to partner with.</span></li>
</ol>
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<div class="MsoNormal" style="text-align: center;">
<b>Editorial Guidelines</b><o:p></o:p></div>
<div class="MsoListParagraphCxSpFirst" style="text-align: left; text-indent: -0.25in;">
</div>
<ul>
<li><span style="text-indent: -0.25in;">Use </span><i style="text-indent: -0.25in;">either
</i><span style="text-indent: -0.25in;">people-first language (people with disabilities) or identity first language
(disabled people) if no preference is stated.
For specific communities who have a history of preferring one or the
other, default to that if no preference is stated. (For instance, the Deaf community and the
Autistic community both generally prefer identity first language. However, those with intellectual disabilities
tend to prefer people first language.
This is not a hard and fast rule, but it is known that a majority of
people in those communities prefer that language.) If the person you are
writing about (if you’re writing about another person) or yourself (if you’re
writing about your own disabilities) has a preference, use that
preference. </span><b style="text-indent: -0.25in;">Never use terms like “special needs”, “retarded”, “wheelchair bound”,
“confined to a wheelchair”, or “differently abled”. Those terms are disrespectful and do not
encourage disability acceptance and pride.</b></li>
<li><b style="text-indent: -0.25in;">Rule of
thumb: if you wouldn’t share it about someone else, don’t share it about a
disabled person</b><span style="text-indent: -0.25in;">. This includes
embarrassing details such as bathroom needs, or sharing about someone in a
difficult moment without their permission (such as videoing a meltdown and
posting it). If it’s something
potentially embarrassing or could be used against someone later on (like in a
job search), and you have that person’s permission to post, indicate that at
the beginning of the post.</span></li>
<li><b style="text-indent: -0.25in;">Avoid
inspiration porn</b><span style="text-indent: -0.25in;">. This is a story
(or an image, or a video, etc.) that objectifies a disabled person in order to
make a nondisabled person feel good.
Examples of this are applauding a nondisabled person for doing something
nice for a disabled person, without the disabled person’s consent or input,
platitudes like “the only disability is a bad attitude”, and similar
sentiments. Make the disabled person an
active participant in your story.</span></li>
<li><b style="text-indent: -0.25in;">Include
image descriptions and trigger warnings, if needed. </b><span style="text-indent: -0.25in;">Image descriptions are a short
description of what a picture looks like so that those who are blind or
visually impaired can access that content.
Trigger warnings are warnings at the beginning of the piece that content
may be triggering for people who are victims of trauma or who have specific
phobias. Trigger warnings are not about
“political correctness”. They’re about
giving people a chance to choose whether or not to read content that may actually
cause them harm. If image descriptions
and/or trigger warnings are not included in your piece, the editors may add
them.</span></li>
<li><b style="text-indent: -0.25in;">Make sure
your piece has a purpose</b><span style="text-indent: -0.25in;">.
Complaining is fine, but specific complaints and ranting are usually
more suited for private groups than a public website. What is the purpose of your piece? To shed light on a specific diagnosis? To show how someone accomplished something
specific? Keep your purpose in mind as
you write and make sure that that purpose shines through.</span></li>
<li><b style="text-indent: -0.25in;">Disability
is difficult, but it’s not just difficult because of symptoms</b><span style="text-indent: -0.25in;">. If your piece discusses how difficult it is
to be disabled or to be a parent of a disabled person, keep in mind that </span><i style="text-indent: -0.25in;">environmental barriers</i><span style="text-indent: -0.25in;"> can be much more
disabling than biological symptoms, and include those barriers in your
piece. This is the essence of the social
model of disability, which says that disability results from the interaction of
a biological </span><i style="text-indent: -0.25in;">impairment</i><span style="text-indent: -0.25in;"> (the
diagnosis of cerebral palsy, autism, etc.) with environmental barriers.</span></li>
<li><b style="text-indent: -0.25in;">Make sure
you’re not using humor at someone else’s expense. </b><span style="text-indent: -0.25in;">Humor is great, but not when you’re using
it to put someone else down or make someone else feel like you’re making fun of
them. Make sure your humor is fun for
all.</span></li>
</ul>
<span style="text-indent: -24px;">These guidelines were developed in conjunction with Carly Findlay of </span><a href="http://carlyfindlay.blogspot.com/" style="text-indent: -24px;">Tune Into Radio Carly</a><span style="text-indent: -24px;">, and Nora Ruth of </span><a href="http://fullmetalheart.com/" style="text-indent: -24px;">A Heart Made Fullmetal</a><span style="text-indent: -24px;">. These guidelines and demands are not to be used without crediting Cara Liebowitz and linking back to That Crazy Crippled Chick.</span><div class="MsoListParagraphCxSpLast" style="mso-list: l0 level1 lfo2; text-indent: -.25in;">
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Cara Liebowitzhttp://www.blogger.com/profile/11860032209178249016noreply@blogger.com12tag:blogger.com,1999:blog-6495205444562241273.post-2521400835691017892015-12-23T19:18:00.000-05:002015-12-23T19:18:09.879-05:00An Open Letter to The MightyDear Editors, Authors, and Supporters of The Mighty,<br />
<br />
I have had several articles featured on your site. Bloggers that I greatly admire - both non-disabled parents of disabled children and disabled adults - have had pieces featured on your site.<br />
<br />
Every time you approached me to republish an article on your site, I debated. The last time you approached me, I outlined my concerns in an email and was assured that you were working on it. You thanked me for the feedback.<br />
<br />
Every time you approached me to republish an article, I consented, because I believe it's important to have my voice and the voice of other disabled people out there in a conversation that's overwhelmingly dominated by "feel-good" stories that position disabled people as pitiful objects or stories that paint disabled people as burdens on our overwhelmed parents. And The Mighty has been surprisingly receptive to publishing stories from disabled people that critique the dominant narratives. But when the latter stories exist literally side by side with the former, it's time to examine what you're really trying to achieve with your site.<br />
<br />
The "Meltdown Bingo" you published this week was crude and unfunny. I embrace humor to cope with my disabilities and I encourage others to do the same. But the difference between the self-deprecating humor that many disabled people utilize and the humor of "Meltdown Bingo" is a question of perspective and nuance. It is the difference between brushing myself off and making a crack about becoming floor pizza when I fall, and other people pointing and laughing at me on the floor. Self-deprecating humor should be just that - <i>self</i> deprecating.<br />
<br />
But "Meltdown Bingo" is simply a symptom of a systemic problem. It was the straw that broke the camel's back. The Mighty has had a long standing habit of posting stories from parents or Mighty staff that objectify and even humiliate disabled children and adults.<br />
<br />
<a href="http://www.donotlink.com/hp9k">Food restrictions</a> are <a href="http://www.donotlink.com/hg5r">presented as funny</a> (similar to Meltdown Bingo). Parents are described as <a href="http://www.donotlink.com/hp7g">"living with autism"</a>, as if autism is some unwelcome houseguest. <a href="http://www.donotlink.com/hp7i">"Pity parties" are encouraged</a> for parents when a child is having a difficult day, instead of figuring out where the problems lie and accommodating the environment as needed. In short, children's difficulties are presented as being simply awful, not for them, but for their parents. <br />
<br />
Some posts are downright mortifying. <a href="http://www.donotlink.com/hp9n">This one</a> goes into detail about the author's teenage son with Down Syndrome's bathroom issues, written under (I assume) the author's real name, along with a photo of her son. There is no consideration for her son's privacy whatsoever. When contrasted with the excellent new A&E series <a href="http://www.aetv.com/shows/born-this-way">"Born This Way"</a>, that show adults with Down Syndrome working, socializing, and following their dreams, a post like this feels particularly jarring. While "Born This Way" showcases adults with Down Syndrome having agency over their own lives and being offered respect (inasmuch as a reality show can offer <i>anyone</i> respect), this Mighty post exploits a teen with Down Syndrome's embarrassing situation for clicks and shares.<br />
<br />
(I refuse to believe the argument that posts like this are written and shared to find solidarity and support. There are plenty of private parent groups both on and offline where parents of children and adults with disabilities can support each other. Sharing your child's embarrassing moments - <i>especially</i> a teenager - publicly is not the way to find support.)<br />
<br />
The Mighty also repeatedly shares the type of "not-news-news" <a href="https://www.ted.com/talks/stella_young_i_m_not_your_inspiration_thank_you_very_much?language=en">inspiration porn</a> that presents disabled people as somehow amazing for doing ordinary tasks (like <a href="http://www.donotlink.com/hpaj">getting a job</a>), and non-disabled as saints for having ordinary interactions with disabled people. These types of stories promote stigma by portraying disabled people as awe-inspiring for simply living our lives, rather than critically examining the barriers to full participation in society for disabled people. I want to see more stories like <a href="http://themighty.com/2015/12/why-im-not-thrilled-about-the-story-behind-th1s-decorated-cake-going-viral/">this one</a>, critiquing inspiration porn.<br />
<br />
And always, always, the term "special needs" is used. Which of our needs are special, exactly? The need to eat? The need to go to the bathroom? The need to feel comfortable in our environment? The need to be treated with basic human decency? Painting our needs as "special" reinforces segregation and pity. Disabled people as a group almost universally reject the term "special needs", and the fact that The Mighty continues using it says to me that you either have not considered the implications of that term or you simply do not care.<br />
<br />
If you want to make The Mighty into a site just for parents of children with disabilities, that's fine. I'll be disappointed, but I won't complain. If you want to change The Mighty into a site specifically for disabled people, that's fine, too (though a major overhaul of your staff and entire organization would be necessary in order to put disabled people in the front seat, so to speak). But you can't have your cake and eat it too, unless you're willing to commit to screening each potential post and publishing <i>only</i> those posts that offer respect to disabled people and <a href="http://emmashopebook.com/2013/03/07/presume-competence-what-does-that-mean-exactly/">presume competence</a>. Because no matter how important our parents are in our lives, the disability experience is, first and foremost, about disabled people. <br />
<br />
That doesn't mean that everything published has to be unfailingly positive. I am the first one to say that disabled life is not all sunshine and roses. But there's a difference between positivity and respect. In essence, if it wouldn't be a story, or you wouldn't publish it if the main "character" in the piece was non-disabled, if you even <i>think</i> that it may not be a respectful portrayal, don't publish it.<br />
<br />
The Mighty's tagline is "We face disability, disease, and mental illness together." I am writing this letter because, in spite of everything, I still believe in that tagline. I still believe that parents of children with disabilities and adults with disabilities can come together to change the world. Perhaps that's naive of me. But I believe The Mighty can make change. <br />
<br />
It's time to decide where your loyalties lie. I'll be waiting.Cara Liebowitzhttp://www.blogger.com/profile/11860032209178249016noreply@blogger.com5tag:blogger.com,1999:blog-6495205444562241273.post-5135357895988890002015-12-02T19:41:00.000-05:002015-12-02T19:41:47.442-05:00Why This Latest "Heartwarming" Story Isn't So HeartwarmingBehold! The internet has exploded with a viral story about a disabled person again! A customer's interaction with an autistic employee is being called "heartwarming" and "amazing". As you may guess, I'm not impressed. Let's break this down, shall we?<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAuvH5AOGXHhVTYaEOH71Jp7Y198xgz9-cv99VBEDPVY1VDlUPiEwaUhNyjOnq8Medcyi-Oswls35wgfifOWyx1ERc-mB3B33tNZSp0vwjMuTsRBHftLN9tCJLsuRulEhZPbAoONnoVQA/s1600/12313683_10207770848646560_8252582049423874522_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAuvH5AOGXHhVTYaEOH71Jp7Y198xgz9-cv99VBEDPVY1VDlUPiEwaUhNyjOnq8Medcyi-Oswls35wgfifOWyx1ERc-mB3B33tNZSp0vwjMuTsRBHftLN9tCJLsuRulEhZPbAoONnoVQA/s400/12313683_10207770848646560_8252582049423874522_n.jpg" width="400" /></a></div>
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The photo shows a typical sheet cake with a pink curlicue frosting border and the words "Happy Birthday Mandy" written in purple frosting. The words are sloppy, but still easily legible. The story that goes along with the photo is as follows:</div>
<br /><blockquote class="tr_bq">
<i>"Picked out a cake at <a href="https://www.facebook.com/meijer/">Meijer</a>. Asked bakery-looking-employee if she could write on it for me. She said she would, and after a long time, she came and presented me with this cake. I looked her In the eye and said thank you before I even looked at the cake. After looking, I nervously laughed and headed to check out- it didn't really matter to me that it looked so bad- I thought people would think it was funny. The cashiers at the self check out didn't think it was so funny though, and called a few more cashiers and a manager over to look, even taking pictures. To my surprise, after they discussed it, one cashier put her arm on my shoulder and said "the girl who wrote that has Autism. Thank you for smiling and thanking her- even though she's not supposed to write on cakes, you probably made her day." So I guess the moral of the story is that kindness is important!"</i></blockquote>
<br />*deep breath* Okay, there's a lot to unpack there!<div>
<br /></div>
<div>
So the customer asks an employee to do (what she thought was) her job. Employee does the job, and customer thanks her. Nothing unusual there, polite customer/employee exchanges happen millions of times a day.</div>
<div>
<br /></div>
<div>
Customer looks at the cake, realizes the handwriting is messy, and instead of politely asking for it to be re-done or politely asking for a manager, decides not to say anything because SHE THOUGHT IT WAS FUNNY. She thought a somewhat substandard cake decorating job was funny.</div>
<div>
<br /></div>
<div>
Because of my CP, my motor skills are somewhere in the neighborhood of a kindergartner's. This very well could have been me, in fact, I'd venture to say this is a BETTER job than I would've done. I was extraordinarily proud of myself when I managed to address an envelope by myself, because it requires neat handwriting and the precise centering of the address on the envelope. I'm 23 years old and this was recently, mind you. I would be extremely upset if people laughed at my best try. I've had college professors tell me that my best try was "not okay" and I "had to try harder", and guess what? It made me cry. Sure, this customer didn't TELL the employee she thought it was funny, but she also didn't realize the cake was messily decorated until after the exchange with the employee was over. And since it's all over social media, I think the cat's kind of out of the bag now. </div>
<div>
<br /></div>
<div>
That's the first thing wrong with this story. You don't laugh at someone doing their job. <b>That's just mean.</b></div>
<div>
<br /></div>
<div>
The customer says the cashiers and managers "didn't find it so funny", yet they all gathered around to "discuss" and take pictures. That sure sounds like mocking to me. If I was that employee, I would have been mortified that my work was causing such a big deal.<br />
<br />
Finally, we get a plot twist. A cashier reveals that the employee who decorated the cake is autistic! She outed a co-worker's diagnosis without her permission. That wasn't her place. You don't out someone without their consent. The cashier and managers made a big deal out of the fact that the customer was polite to an employee who did something for her - something that's ridiculously unremarkable - because *gasp* the employee had autism! <br />
<br />
<i>"You probably made her day." </i>Why, exactly? Because she was polite to an employee who did her job? That's a normal, ordinary interaction. No one gets to speak for me. No one gets to tell other people what could "make my day" except for me.<br />
<i><br /></i>
<i>"She's not supposed to decorate cakes." </i>Regardless of whether or not the employee should have done something that technically wasn't part of her job, the phrasing of this - "she's not supposed to decorate cakes" - gives me an uncomfortable feeling, like the employee was a puppy being scolded. Not to mention, disclosing what is and isn't part of a co-worker's job description to a customer is rude, at best.<br />
<br />
<i>The moral of the story is that kindness is important! </i>The customer wasn't kind. The customer was polite. She wanted to laugh at the employee's work. That's not kind. But all of a sudden, after it was revealed that the employee was autistic, the idea of "kindness" suddenly occurred to this customer. The fact that the employee was disabled should not have had any impact on this situation, and yet, after the disability was revealed, the customer suddenly decided that she had been "kind" to the poor disabled employee and decided to go home and post it on social media, without permission from the employee or anyone involved. <br />
<br />
And now that it's all over social media, it's almost certain that that employee is going to see it, and see that a customer is patting herself on the back for being a decent human being to her. Because disabled people use social media, too! Even if the employee herself doesn't use social media, the nature of a viral story like this means that someone connected with her will see it. And if I was that employee, I'd be furious.<br />
<br />
<b>This is a prime example of inspiration porn - using and objectifying a disabled person to advance your own purposes and ideas. </b>The disabled person in this story has no agency or characteristics of her own, besides her disability, which is not even disclosed by her. She is simply used for a moral lesson about kindness. Sure, kindness and politeness towards people is important. But it's important for EVERYONE, not just disabled people. A normal customer-employee interaction wouldn't have gone viral. It probably wouldn't have even made it onto social media. But because the employee was autistic, the customer suddenly thinks she did a good deed by being outwardly nice to the employee.<br />
<br />
Disabled people don't exist so that you can feel all warm and fuzzy about doing a "good deed" or being "kind". We're human beings. And next time, think before you post. If you wouldn't make a story out of it if it happened to be centered around a nondisabled person, don't make a story out of it when it centers around a disabled person. Simple as that.<br />
<br />
(And if that employee happens to be reading this....I applaud your cake decorating skills, which are probably better than mine. I'm sorry you were outed without your consent and I'm sorry the whole internet seems to think it's heartwarming for you to do something that was asked of you. If it helps, I think you're perfectly, wonderfully ordinary, autism or no autism.<br />
<br />
Love from a fellow motor skill impaired ordinary person!)</div>
Cara Liebowitzhttp://www.blogger.com/profile/11860032209178249016noreply@blogger.com66tag:blogger.com,1999:blog-6495205444562241273.post-24355081810915165622015-10-03T23:27:00.001-04:002015-10-03T23:46:00.805-04:00The Curious Case of Anna Stubblefield and DMan Johnson: Introduction and Intelligence<i>This is Part One in a series of posts discussing the trial of former Rutgers professor Anna Stubblefield. The series will be broken into four parts, with three parts each focusing on a different factor of the case. The fourth and final post will be an analysis of the impact that this case is likely to have on disability and civil rights, both legally and socially.</i><br />
<br />
The disability community has been ablaze for the past few months over the case of Anna Stubblefield, a Rutgers professor accused of sexually assaulting DJ "DMan" Johnson, a nonspeaking man with cerebral palsy and hydrocephalus. DMan communicates via facilitated communication, which Anna taught him, and according to Anna and her lawyer, consented to sexual activity.<br />
<br />
In a gross miscarriage of justice, Anna was convicted and is being held without bail until sentencing on November 9th.<br />
<br />
The trial was centered on three main factors: <b>intelligence, communication, </b>and<b> consent</b>. The logical process to follow would be to focus on the third factor, consent, taking into account the second factor, communication. After all, it was a sexual assault case, and sexual assault and rape occur when someone has not consented to the sexual activity. Consent (obviously) needs to be communicated in some way, shape or form. The crux of the trial <i>should </i>have been <b>"Did Dman have a way of communicating consent, and if so, did he consent to sexual activity with Anna?" </b>Unfortunately, because of the actions of the judge and the prosecution, the crux of the trial became <b>"Did Dman have the mental capacity to consent?"</b> The answer they reached was "No."<br />
<br />
So bearing all that in mind, let's start off this series with a discussion of <b>intelligence</b>.<br />
<br />
The prosecution's argument was that DMan is "mentally defective", and does not have the mental capacity to consent to sexual activity. So let's talk about intellectual disability (formerly mental retardation).<br />
<br />
First of all, intellectual disability is a fairly nebulous category that relies on IQ testing to determine. According to the DSM-5, the latest Diagnostic and Statistical Manual, the first criterion of intellectual disability, deficits in intellectual functions, can be satisfied by <a href="http://aaidd.org/docs/default-source/annual-meeting/tasse-dsm5-id-definition-5-23-2013-aaidd-2013.pdf?sfvrsn=0">"both clinical assessment and individualized, standardized intelligence testing."</a> The score of the tested person must be at least two standard deviations below the mean (average) score of the general population. This is meant to be a concrete, quantitative (based on numbers and statistics) way of identifying those with intellectual (and learning, though that's a separate set of issues) disabilities.<br />
<br />
Doctors have claimed that DMan Johnson "has the mental capacity of an 18 month old" and is "severely mentally disabled". He has been declared legally incompetent and is under the guardianship of his mother and brother. Obviously, he has been tested, particularly in the school system, where the law mandates that reevaluation must at least be considered every three years. But unequivocally labeling someone intellectually disabled based on a test score is problematic at best.<br />
<br />
It has been known for decades that IQ tests are racially and culturally biased. In the 1984 case of Larry Lucille P. vs. Riles P., the court found that <span style="font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;"><a href="http://openjurist.org/793/f2d/969/larry-lucille-p-v-riles-p">“[o]n the average, black children score fifteen points, or one standard deviation, below white children on standardized intelligence tests.”</a> It was further found that while the tests had been standardized on the basis of sex (so it was not biased against girls), no standardization on the base of race had ever been done, because black children were simply assumed to be less intelligent than white children. The court banned the use of IQ tests as a tool to place children in what was then called "EMR (educable mentally retarded) classes" in the state of California. As recently as 2009, researchers have tried to claim, using IQ scores as evidence, that people of color (<a href="http://www.scribd.com/doc/140239668/IQ-and-Immigration-Policy-Jason-Richwine">particularly Hispanics</a>) are naturally less intelligent than white people, suggesting that the essentially racist nature of IQ tests has never been corrected. DMan Johnson is a Black man, which means that IQ tests are automatically biased against him and he is more likely than a white person to have an IQ score in the intellectually disabled range. Strike one for DMan.</span><br />
<br />
Let's zoom in and look at one of the most well known assessments of intelligence, the Stanford-Binet test. The most recent iteration of the test, the Stanford-Binet 5, was released in 2003, meaning that the test hasn't been updated in over a decade. Among its <a href="http://www.assess.nelson.com/pdf/sb5-asb1.pdf">features</a>, the SB5 has "colorful artwork, toys, and manipulatives". That's right, manipulatives. Which must be, as the name implies, <i>physically manipulated</i>. DMan has cerebral palsy, as I do. One of the primary characteristics of CP is fine and gross motor impairment, making it difficult to manipulate <i>anything</i>. I had fifteen to sixteen years of occupational therapy to address this very issue, and I still have difficulty with some fine motor tasks, such as brushing my teeth (I use an adaptive toothbrush to minimize gum swelling from improper brushing), nail clipping (ditto on the adaptive nail clippers), and handwriting (I was taught to type by an incredible OT at age eight and since then I have typed whenever possible). As someone with an IEP (Individualized Education Plan), I was also assessed every three years while in school, and I remember my frustration with the math portions of the test, as I couldn't type math and hand fatigue and pain contribute to my writing very slowly, providing an inaccurate picture of what level of math I could accomplish during a timed test. If you rely on manipulatives to tell you <i>anything</i> about a person with CP (besides the fact that they have fine motor impairment), you will not get an accurate score. Strike two for DMan.<br />
<br />
The SB5 also features nonverbal content, contributing to a Nonverbal IQ. However, the test is not clear whether ALL content can be answered nonverbally, as would be the case for someone like DMan. The test "[h]as [an] equal balance of verbal and nonverbal content in all factors" suggesting that the verbal and nonverbal content are designed to be administered together, and that there is not an option for only nonverbal content to be measured. The description of the test also discusses "verbal and nonverbal subtests", suggesting that all subtests, verbal and nonverbal, must be administered. In addition, previous versions of the test focused much more on verbal content, and since DMan is in his thirties, it's reasonable to assume that he was diagnosed with an intellectual disability using a version of the test that focused majorly on verbal content, making it even more difficult for him to do well and obtain a high or even average IQ score. Strike three, DMan's out!<br />
<br />
(Bonus strike: 18% of the SB5 is in the area of "visual-spatial processing". It is the third largest section. Visual processing disorders are a common co-morbid condition of cerebral palsy (and one of the lovely co-morbids that I've collected). The most recent CDC studies available say that <a href="http://www.cdc.gov/ncbddd/cp/data.html">15% of children with CP have a visual impairment</a>, which can include visual processing impairment. It is not clear whether or not DMan Johnson has a visual processing impairment, but there is a significant chance he does, making the visual-spatial processing section also difficult to borderline impossible. I have a visual processing disability. I have trouble judging distances, one of the reasons I don't drive. I can't see all that much in 3D. I have absolutely no sense of direction and I have been known to drive my wheelchair down steps because I can't distinguish them from the ground below. None of these factors influence my ability to do things typically thought of as "intelligent", like obtain a college degree, or to consent to sexual activity.)<br />
<br />
Now that we've established that the methods used for determining intellectual disability are multiply skewed against DMan, the diagnosis of intellectual disability in itself seems to become suspect. It is not a question of whether a person, like DMan, is "truly" intellectually disabled, it is an assertion that the entire category of intellectual disability is fundamentally flawed, particularly when used to classify a Black man with cerebral palsy. Because of these concerns, it is my opinion as a disability studies scholar with a background in special education that the diagnosis of intellectual disability cannot be reliably used to prove DMan's competence and ability to consent. Yet that is exactly what the prosecution did in this case, drawing a direct connection between his supposed "mentally defective" state and his ability to consent to sexual activity.<br />
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If you're not suspicious of the prosecution yet, you should be.<br />
<br />
In the next post, we'll talk about the second area of focus: <b>communication</b>. This is a big one with a lot to unpack, so stay tuned.Cara Liebowitzhttp://www.blogger.com/profile/11860032209178249016noreply@blogger.com4tag:blogger.com,1999:blog-6495205444562241273.post-2031635264794450232015-09-05T23:03:00.000-04:002015-09-05T23:03:01.050-04:00Dear Special Education Majors: You Don't, Actually, Know EverythingDear Special Education Majors,<br />
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Most of you have gone into this field because you want to work with disabled people in one capacity or another. So when you meet a Real! Live! Actual! Disabled Person! in the wild, you're eager to show off what you've learned. But here's the thing: I'm not your professor. You are not being tested. I'm not going to grade you. And when you tell me that you <i>understand</i> when a kid is having a <i>behavior</i> in a public place or when you ask me if I use my mobility aids <i>all the time</i> because it looks like I can walk without them, it does far more to damage your credibility than if you had just kept your mouth shut in the first place. (Hint: the answer to that last question is "it's none of your business", unless you're a doctor, or a professional that is going to determine how much help I get based on how disabled I look.)<br />
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I get it. I've been on your side of the table. I was a special ed major in undergrad. I know how they shove the medical model down your throats, hoping that you'll become perfect little machines that input diagnoses and output accommodations. I know how they make you forget that the people you'll be working with are actual human beings. So I'm here to put your tired, overworked minds at ease. I don't want you to thrill me with your vast amounts of knowledge. The reason for that is because, despite what you might think, you don't know everything, and quite possibly don't know anything.<br />
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Being a special ed major doesn't tell you anything about what it's like to actually be disabled. It doesn't put you in my body, nor does it give you magical powers to determine what I can and can't do. It also doesn't give you the right to determine that I'm "not like [the types of kids you think you'll encounter in special ed]", because guess what? I <i>am</i>. And so are my friends. The message you're sending, whether you mean it or not, is that I am somehow superior because you're having a conversation with me outside the special ed box. Because you consider me a friend. Because you <i>like</i> me. Is that really the attitude you want to bring to your job? That your students are only worth something if they can conform to social norms? If you're unwilling to let go of your preconceptions, turn around and walk out the door right now. Your students are not your charity cases, and neither am I.<br />
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Dear special ed majors, please don't tell me you respect disabled people. Show me. Most of you have a long way to go.<br />
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Love,<br />
CaraCara Liebowitzhttp://www.blogger.com/profile/11860032209178249016noreply@blogger.com5tag:blogger.com,1999:blog-6495205444562241273.post-45128645818350682962015-06-16T01:01:00.001-04:002015-06-16T01:01:17.362-04:00On Being "Ugly Disabled"<div><i>This piece has been an idea in the works in my head for a long time. At first I thought I wanted to write about being professional when looking professional means suppressing parts of your disability. That's touched upon here and may be a separate piece eventually. But what I really wanted to write about was the hierarchy of disability, the way that people who can sit up straight and use a manual chair are higher up on the totem pole. It's a concept I've been trying to articulate for years and only now do I have the words, with gratitude to Corbett OToole and Naomi Ortiz for finding them first. Thank you both. </i></div><div><br></div>I am not one of the "pretty disabled". I may have been close to it, once, but as I've gotten older and my disabilities have changed and multiplied, I have quickly moved away from any hope of "passing" as either non disabled or "prettily", "acceptably" disabled. (I am aware of the ironies in making that statement as a 23 year old. My chronological age is young, but my physical body feels old.)<div><br></div><div>My primary disability, the one that people see right away, is cerebral palsy, specifically of the spastic type. This means that there is constantly a quite literal tension within my body, pulling everything into interesting shapes. I do not sit up straight and my posture becomes worse when I am tired or excited, which can lead to me sliding out of my seat or propping myself up with my arm to keep from falling completely over to the left (my weaker side). My hands are sometimes curled into fists, which I may not notice for a long while until I suddenly become aware of the spasticity in my hand or I look down and realize that I look like I'm getting ready to punch someone. It takes a great deal of effort to push my body into "normal" shapes and often it requires a conscious effort. ("Unclench your fist now. That's it. A little more…"). <span style="background-color: rgba(255, 255, 255, 0);">Unless I am indoors in a familiar environment, or an environment that is very small (such as someone's house), I use a variety of mobility aids. My arsenal of mobility aids changes rapidly, and at the present time includes two canes, a walker with a seat, and a power wheelchair as its main staples. Other players may include a folding transport chair, a folding cane that goes with me when I travel, and forearm crutches. </span><span style="background-color: rgba(255, 255, 255, 0);">When I walk, my gait is "flailing", as one friend called it, or "Carapulting": a term coined by my family to describe the way I tend to fling myself up steps and through doorways. (It is easier for me to keep my balance going fast, as opposed to going slow, or at least that's how it was explained to my mother when she asked the doctor why I walked so fast.)</span></div><div><span style="background-color: rgba(255, 255, 255, 0);"><br></span></div><div>Because of volume control issues relating to the muscles in my jaw, tongue, throat and diaphragm, my voice is very loud and often a bit shrill. I am usually not aware of my volume until someone tells me I am shouting, and even then I must stop and think to lower my voice. My "CP stutter" has gotten worse over the years, and though my speech is generally easy for people to understand, I tend to get "stuck" on words, sounds, and phrases. Again, this gets worse if I'm tired. Recently, I started a sentence with "Meg is" and found myself sounding like a broken record, going "Meg is Meg is Meg is" for awhile until I was able to finish the sentence. My Autistic friend Alyssa laughed and said "You would think YOU'RE the one with issues with flash photography!" (referencing an incident earlier in the night where we had to leave a restaurant because the flash photography was causing her to experience cognitive issues). <span style="background-color: rgba(255, 255, 255, 0);">My nonexistent sense of direction and issues with perception and visual processing leads me to look incompetent or like I don't know what I'm doing a lot of the time. This does not even begin to get into my other disabilities which are less visible. </span></div><div><span style="background-color: rgba(255, 255, 255, 0);"><br></span></div><div>I tell you all this not so you'll feel sorry for me, far from it. (My latest t-shirt says "Piss on Pity" and I love it.). I tell you all this so you'll know what I mean when I say I'm not "pretty" disabled, not "disability pretty". People want an image of disability that is palatable, if they have to have an image at all. Corbett OToole says in her book "Fading Scars: my queer disability history": "too many people…want our public image to be a good looking white guy with a perfect body, other than the fact that he doesn't walk, sitting in a slick expensive manual wheelchair". This is the first time I've seen this phenomenon documented any place but my own head and my conversations with other "ugly" disabled people. There's a reason that people like me aren't in the media, apart from feel good inspiration porn stories. There's a reason I quickly grew bored of Push Girls, because it was all about stereotypically pretty women sitting in pretty, sleek manual chairs. It was about the "pretty disabled" and I, quite frankly, have had enough of those stories. </div><div><br></div><div>I am ugly disabled and I have no shame, only a quiet sort of longing to see my people represented. Even the early disability rights leaders were mostly pretty, because a body that doesn't move much due to polio is better than a body that moves too much due to CP. At disability conferences I seek out my people like a magnet, and it is perhaps unsurprising that I have found the most solidarity with people who rock and flap and whose speech is sometimes not fluent. People who defy typical notions of being "professional", who lie on the floor during presentations and dim the fluorescent lights. They are the ones who make me feel at home. </div><div><br></div><div>I am ugly disabled and I want you to know it. If you're ugly disabled too, don't try and force your body to look pretty, because I think you're beautiful just the way you are. </div><div><br></div><div><br></div>Cara Liebowitzhttp://www.blogger.com/profile/11860032209178249016noreply@blogger.com12tag:blogger.com,1999:blog-6495205444562241273.post-33905114689393238012015-05-01T00:25:00.001-04:002015-05-01T00:25:25.970-04:00My Most Visible Disability Has the Least Impact on Me (No, Really)<i><a href="http://tinyurl.com/BADday2015">Blogging Against Disablism Day 2015</a> post! This is year....eight or nine for me, I think.</i><br />
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I am multiply disabled. I have cerebral palsy, anxiety disorder/OCD, and a fairly recent diagnosis of asthma. And those are just the ones with formal diagnoses or that are not incorporated within my other diagnoses. If I really stop and think about all the formal diagnosed disabilities, plus the ones I've self diagnosed and/or haven't had the chance to get tested for yet, the disability count is probably around six or seven. The CP alone could be broken down into three or four distinct disabilities.<br />
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I've been "out" about being multiply disabled for several years, once I realized that the label could apply to me. All of my disabilities are intertwined. Yet, people see me walk in with mobility aids or roll in my wheelchair and it's like their focus narrows to <i>just</i> the parts they can see. They don't stop to consider that a) I have more than one disability, and b) that those disabilities could actually affect my life <i>more</i> than CP does. One of the reasons I love elmindreda's <a href="http://www.elmindreda.org/reflections/slot.html">essay</a> on the "difference slot" is because it rings so true. Only, in my case, I don't have a choice as to which disability is considered my singular "difference". It's obvious from the minute I enter a room. It wasn't always, but by the time I was diagnosed with other things besides CP, I was using mobility aids pretty much full time outside the house, and so had entered the realm of the visibly disabled.<br />
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I think people often think of my CP as sort of the "main dish" and all my other disabilities as "side dishes". I still fall into this trap myself sometimes. After all, I use a wheelchair! It's a Big Thing! It takes up space! It makes my presence very, very obvious. But day to day, what affects me the most is actually <i>not</i> CP. Most days, my CP is just sort of <i>there</i>. This is the body I inhabit, and since I've always inhabited it, I don't know any different. Sure, it presents me with probably the most environmental barriers out of all my disabilities. My asthma or anxiety doesn't prevent me from going into a store or accessing transportation (usually, unless there's a lot of cigarette smoke or other smells that can trigger my asthma. And don't even get me started on car exhaust.). But anxiety and asthma both disable me in ways my CP never has.<br />
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My anxiety can lead me to cry for hours on end, for ridiculous, tiny reasons. It twists my mind into making me believe that everything is horrible, even if everything is going well. It can cause me to avoid foods, even foods that I love, because of my irrational fear of food poisoning. Sometimes, it'll cause hypersensitivity to smell, particularly different food smells in one place. Many times during college, I'd eat a few bites, become overwhelmed by all the mixing smells, rush out of the dining hall, and end up hunched over, gagging and dry heaving and praying that I wouldn't throw up on the grass in front of all my peers. My phone anxiety causes me to put off making important calls, like making doctor's appointments, because speaking to strangers on the phone terrifies me.<br />
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My asthma makes me feel like someone is squeezing my lungs. If my asthma is triggered, I can end up coughing for days on end. Even if I don't have a reaction at first, I often have delayed reactions, where I'll be fine and then as soon as I lie down to sleep, I'll be coughing and short of breath. On a bad day, I won't be able to walk ten feet to the bathroom without feeling short of breath. I try to make my showers as short as possible, because the combination of steam, moisture, and scented shower products makes me feel like I can't breathe. <br />
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Both anxiety and asthma can cause insomnia, which can probably be considered another disability in and of itself. All of my disabilities can cause chronic fatigue. Not being able to breathe or constantly obsessing are both <i>incredibly</i> exhausting. Ironically, though everyone thinks my CP is a big deal, none of the four prescription medications I'm currently on are for CP reasons.<br />
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Though I've gotten (mostly) comfortable being disabled in public with my mobility aids, I still feel a sense of shame when I have an anxiety attack in public or when I need to use my inhaler. I have sat coughing uncontrollably during class, and I have forced myself to wait to use my inhaler, because somehow, in some weird way, I'm embarrassed to be disabled in that way. I'm embarrassed to be disabled in a way that deviates from what people see. I'm comfortable telling people I need wheelchair accessibility, but I'm far less comfortable telling people that I need a low scent or scent free environment, or a quiet room where I can go if I'm having an anxiety attack.<br />
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My difference slot is broken, stuffed by so many differences that I fear sometimes that people will think I'm just looking for attention. But there's more to me than meets the eye, and I hope that someday, other people will give as much consideration to my other disabilities as they do my mobility impairment.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://tinyurl.com/BADD2015" style="margin-left: auto; margin-right: auto;"><img alt="Blogging Against Disablism Day, May 1st 2015" border="0" src=" https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgueOq64ytYHaFMrR67YYZl8UPdMH0wOWOYWvi1W6ebi08hUZ3feNLKLUZO3sBqAr1cMWM31ziwH16uy6T3BoDwL7YAM5eUyE8TxrTb3nIZcMP4Jl83fpS4_AI9bGsFLZfK92DeEo6V5DM/s320/bad02.gif " title="Blogging Against Disablism Day, May 1st 2015" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>[The Blogging Against Disablism Day graphic, depicting a colorful grid, with each square showing a different colored stick figure person, like the ones for the restroom signs. Some of the stick figures have mobility aids, and one of them is just a handicapped symbol. At the top it says "Blogging Against Disablism"]</i></td></tr>
</tbody></table>
Cara Liebowitzhttp://www.blogger.com/profile/11860032209178249016noreply@blogger.com3tag:blogger.com,1999:blog-6495205444562241273.post-39738907531476049692015-04-19T14:39:00.000-04:002015-04-20T23:57:29.853-04:00ADA Generation Girl: Reflections on the 25th Anniversary of the ADAOn July 26th, 1990, just shy of two years before I was born, the Americans With Disabilities Act was passed. On June 3rd, 1992, I arrived in this world three months prematurely, marking my status as a disabled person and placing me squarely in the ADA Generation - the first generation of disabled people to grow up with the ADA.<br />
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The ADA and I have together explored the unmitigated wonders of toddlerhood, the rapid growth of childhood, and the rocky tumults of adolescence. Now we are both in our twenties, a little jaded, a little bruised, but stronger because of our struggles. And I am forever grateful to the ADA for ensuring that my rights are protected.<br />
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I think one of the biggest things that the ADA has instilled in us is a sense of expectation. When I get on a bus or a train, I <i>expect</i> that it's going to be accessible for me. When I go into a store, or see a show, my expectation is that I will be able to go into the building and spend my hard earned money, just like everyone else. I expect that I will be able to access education and get a job. The ADA doesn't guarantee that I won't face discrimination along the way, but it ensures that I will have channels to report that discrimination. Over the last year, I have traveled more than ever before, both for pleasure and for business, and the sheer fact that I am able to go into an airport or a train station, board a train or a plane, and get to my final destination with a minimum of fuss reflects how much the ADA has changed the landscape of America for people with disabilities.<br />
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The ADA shouldn't have to exist. I should not have to quote legislation in order to prove what should be self-evident - that the state of my body or mind does not erase the rights that I am entitled to. Rights should not be conditional, and yet, we have had to fight, over and over, for women's rights, for the rights of people of color, for disability rights, for gender and sexual minorities' rights, proving that the words of our founding fathers, "We hold these truths to be self evident, that all men are created equal." were no more than hollow lies. Yet, my wish that the ADA didn't have to exist can exist side by side with my profound gratitude that such a law <i>does</i> exist.<br />
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This summer, I will celebrate the ADA and all it has done for me and for so many others, particularly in the great city of New York, where I see the ADA's impact every day. I'm working with the Mayor's Office for People With Disabilities Youth Council in order to plan the <a href="http://www.nyc.gov/html/mopd/ada25nyc/html/home/home.shtml">ADA25NYC</a> initiative - an exciting lineup of events and celebrations right here in New York for the 25th anniversary of the ADA. If you're hosting a disability event in NYC or the surrounding areas, you can <a href="http://www.nyc.gov/html/mopd/ada25nyc/html/calendar/submit-an-event.shtml">add it to the MOPD calendar</a>. On social media, you can use the hashtag #ADA25NYC and follow all the great events that are happening. And if you're a blogger, we want you! My friend and fellow Youth Council member Emily Ladau and I are <a href="http://wordsiwheelby.com/2015/04/25-ways-the-americans-with-disabilities-act-sparked-positive-change-in-the-united-states/">hosting a linkup of blog posts</a> for the 25th anniversary of the ADA. If the ADA has impacted your life, we want to hear about it! Send your submissions to Emily at wordsiwheelbyblog@gmail.com and we'll be spending the next few months linking to all of your wonderful posts. For those of you who would like to contribute, but don't have a blog of your own, I cordially welcome guest posts on my blog. Together, let's look back on 25 years of the ADA - and look forward to 25 more.Cara Liebowitzhttp://www.blogger.com/profile/11860032209178249016noreply@blogger.com0tag:blogger.com,1999:blog-6495205444562241273.post-83903700020114070542015-02-24T01:01:00.000-05:002015-02-24T01:01:14.209-05:00Inspiration Porn isn't Progress: A Response to Josephine FairleyImagine, if you can, a world where people with brown eyes are inherently superior to those with blue eyes (blue eyes encompassing all those with non-brown eye colors). People with brown eyes are stronger, faster, smarter. People with blue eyes are weaker, slower. They don't learn as well, or as fast. It's not their fault, of course. That's just the way it is.<br />
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In years past, we segregated people with blue eyes. We institutionalized them, because they were a menace. We didn't have the resources to care for them. They were a burden on us. Blue-eyed people couldn't go into public buildings or ride public transportation. We called them "blue-eyed".</div>
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Now we know better. We are enlightened. We have compassion for those less fortunate than us. Our children mix with children with blue eyes in our classrooms. People with blue eyes are our neighbors, our family, maybe even our friends. We pass them in the streets every day. And the linguistic change of people first language emphasizes that people with blue eyes are people, because we apparently didn't know that before.</div>
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I'm a graduate student and there are a few students with blue eyes in my class. I'm continually amazed at how well they do. It's so hard for them to get anything done and still they soldier on with a smile on their faces. You know, there are government benefits for those people. They could sit at home and collect a check all day. But they're out and about, learning and working and getting coffee like the rest of us. Some of them have done so well, you forget they have blue eyes. I find it really, really brave, what they do. It must be so difficult for them to get up in the morning. Those poor dears. God bless them. They don't let their conditions get them down. They inspire me every day. After all, if they can go about life without complaining, then what's my excuse? My eyes are, fortunately, fully brown. </div>
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This is an adaptation on Jane Elliot's famous <a href="https://www.youtube.com/watch?v=uQAmdZvKf6M">"Brown Eyes, Blue Eyes"</a> experiment. The above scenario is based on things I have heard all my life, not as a blue-eyed person (though in reality, my eyes are actually hazel, putting me in the blue-eyed category), but as a disabled person. While Elliot originally intended the experiment to highlight the realities of racism, I'm using it to highlight the realities of ableism in our society. I'm also using it to make a point about <a href="http://thatcrazycrippledchick.blogspot.com/2014/01/explaining-inspiration-porn-to-non.html">inspiration porn</a>, a phenomenon that British newspaper writer Josephine Fairley <a href="http://www.telegraph.co.uk/women/womens-life/11417282/Disabled-people-as-inspiration-porn-is-progress.html">seems to think is "progress"</a>. </div>
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Fairley, someone who, by her own admission, is nondisabled, says "...considering the prejudices and other challenges that most disabled people have had to encounter in their lifetime – appalling access to many buildings, being referred to in the third person, or, and I have this direct from a disabled friend, ‘being farted at’ right, left and centre (the wheelchair-bound being positioned at the exact height the rest of the population break wind), I don’t see how this can be anything but a positive thing."*<br />
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The thing is, it's all part of the same animal. All prejudice depends on casting another group as "Other" and inferior - something referred to in research circles as epistemological violence. Talking about me in the third person while I'm right in front of you (or calling me a "wheelchair", as my best friend <a href="http://thesqueakywheelchair.blogspot.com/2015/01/hey-you-my-name-is-not-wheelchair.html">experienced recently</a>), denying me access to a building, and calling me an "inspiration" because I dare to show my face on the street and look like I'm enjoying life all stem from the same fundamental idea: that being disabled means that a) I'm not entitled to the same respect that other human beings enjoy and b) that my life must be so horrible that to go out in public and do normal, everyday activities without moaning about my terrible, horrible, no good, very bad life is a sign that I am some sort of saint. <br />
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The thing is, my life is good. And the very fact that I even have to say that shows that disability is still viewed as something inherently negative. I'm not any better or any worse off than the rest of the population. I have my privilege and my non-privilege, just like the rest of the population. Strangely enough, no one ever calls me an inspiration for getting around in a society that actively dehumanizes me. (Even that would be problematic. I shouldn't be inspiring for living my life in spite of what society says about people like me. You should be appalled that we all live in a world that does horrible things to people who are different from an arbitrary societally defined norm.) People just see my disability (the visible parts, anyway) and automatically I become an "inspiration" to them.<br />
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What do I inspire people to do? Well, Fairley says I inspire people to stop complaining about their own lives. "[I]f putting the physically and mentally challenged in the spotlight serves to make any single non-disabled/non-terminally ill person think twice about complaining about their ‘First World Problems’ or go on a whingeathon about their lot in life, I’d welcome that."<br />
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Personally, I find that hilarious. Miss Fairley, do you really think I don't complain about my "First World Problems"? Am I automatically an always-smiling, never-complaining, happy-go-lucky Pollyanna saint just because my body operates different than yours? Well, let me assure you, I whine plenty when there's "no food in the house", despite the five different microwaveable meals in the freezer. I get edgy when the TV or the Internet isn't working. And if there's no chocolate around when I have a craving, I am one unhappy camper. In short, in those ways, I am a "normal" 22 year old, and frankly, a "normal" human being.<br />
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Moreover, I am not obligated to be your inspiration. I do not exist to teach you a lesson. I don't go out in public to show you how good you've got it (which, again, rests on the assumption that my life is inherently bad, or at least worse than yours). I'm sure Amy Purdy and other disabled people who are in the spotlight recently don't do what they do in order to remind nondisabled people that some people have "real problems". (Once again, disability is not a problem, until other people make it a problem. This is the basic social model of disability. The problem is not with our bodies and minds, it is with society.) If an interaction with me results in the person thinking "Wow, my life is pretty good after all.", that logically implies that they compared themselves to me and decided that my life is worse than theirs, when it's not. It's just different.<br />
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So no, Miss Fairley, inspiration porn is not "progress", and I find it deeply offensive that you would presume to make such a grand statement when you have not experienced the day to day realities of ableism. Inspiration porn is simply another form of ableism, cloaked in a syrupy kind of compassion.<br />
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(But I still think blue-eyed people are <i>so</i> inspiring. *wink*)<br />
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*<i>P.S: Dear Miss Fairley, I am not "wheelchair bound". I am not tied and bound to my wheelchair, unless you really wanna get kinky. I am a wheelchair user. <a href="http://thatcrazycrippledchick.blogspot.com/2015/01/walking-is-overrated-learn-to-love.html">My wheelchair frees me</a>. Perhaps you are "walking bound"?</i></div>
Cara Liebowitzhttp://www.blogger.com/profile/11860032209178249016noreply@blogger.com6tag:blogger.com,1999:blog-6495205444562241273.post-21986036298230528292015-01-20T13:27:00.003-05:002015-01-20T13:27:55.785-05:00Walking Is Overrated: Learn to Love the Wheelchair<!--[if !mso]>
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<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif";">I’ve
been reading a lot of comments from parents of children with CP lately to the
effect of “I’m trying to keep my child from needing mobility aids” or “I’m
trying to keep my child out of a wheelchair.” Nothing makes me angrier and
sadder than parents trying so hard to keep their child walking independently
that they deny their child the use of mobility aids.<span style="mso-spacerun: yes;"> </span>Mobility aids are life changing.<span style="mso-spacerun: yes;"> </span>I know, because they changed my life for the
better.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif";">From the
age of three, when I took my first steps without a walker, to the age of
twelve, I walked completely independently.<span style="mso-spacerun: yes;">
</span>I spent all my elementary school years, as well as two years of high
school in a large school spanning six grades, walking independently. <span style="mso-spacerun: yes;"> </span>I always had poor balance and tired easily.<span style="mso-spacerun: yes;"> </span>I fell often.<span style="mso-spacerun: yes;">
</span>The only mobility aid I used was an uncomfortable fold up transport
wheelchair that my parents had to push.<span style="mso-spacerun: yes;">
</span>I tried to avoid using it whenever possible.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif";">Then,
when I was twelve, a childhood friend, who is also disabled, told me I should
start using a forearm (also called Lofstrand, elbow, or Canadian) crutch.<span style="mso-spacerun: yes;"> </span>She used one and found that it really helped
her.<span style="mso-spacerun: yes;"> </span>I gave it a shot, and I never went
back.<span style="mso-spacerun: yes;"> </span>At first, I only used it for long
distances. <span style="mso-spacerun: yes;"> </span>After two difficult years, I
decided to use it in school.<span style="mso-spacerun: yes;"> </span>I was
terrified what people would think.<span style="mso-spacerun: yes;"> </span>I
didn’t want questions or pity.<span style="mso-spacerun: yes;"> </span>I just
wanted to get on with ninth grade and not get squished like a pancake.<span style="mso-spacerun: yes;"> </span>I was pleasantly surprised.<span style="mso-spacerun: yes;"> </span>There were some questions and comments the
first week or two, and after that, my crutch was just accepted as part of me,
with a few exceptions.<span style="mso-spacerun: yes;"> </span>I used my crutch
in school until I graduated high school.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif";">Soon
after I started using a crutch, I began thinking seriously about college.<span style="mso-spacerun: yes;"> </span>My older sister had just started college, and
I was forced to use my transport chair as my parents and I joined her on campus
tours.<span style="mso-spacerun: yes;"> </span>It slowly dawned on me that there
was no way I’d be able to walk around a college campus.<span style="mso-spacerun: yes;"> </span>In order to go to college, I would have to
get some sort of wheelchair that I could propel myself.<span style="mso-spacerun: yes;"> </span>A manual wheelchair was almost immediately
ruled out, because even if it was lightweight, I wouldn’t have the arm strength
to push it all around a campus.<span style="mso-spacerun: yes;"> </span>I needed
something portable, because my parents both drove sedans and weren’t willing or
able to buy a lift-equipped van.<span style="mso-spacerun: yes;"> </span>My
physical therapist recommended a mobility scooter, and so, after extensive
research, my new <a href="http://www.pridemobility.com/scooters/models.asp">3
wheel scooter</a> from <a href="http://www.pridemobility.com/">Pride Mobility</a>
arrived in my backyard the summer after eleventh grade.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_LDFRFW8IYtKVECjJ06wdNcwiS7MnDVKL8wGxD8dtbesaKSnWSm36lZav5sX_YPkGXK_1UeJvxBjJMlDhUhyxbjJ92mXi-N38tlvF2h_Sgswx0sgj7Vt6aoLozA4C_Q5sj93FrRYbr-s/s1600/me+on+scooter.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_LDFRFW8IYtKVECjJ06wdNcwiS7MnDVKL8wGxD8dtbesaKSnWSm36lZav5sX_YPkGXK_1UeJvxBjJMlDhUhyxbjJ92mXi-N38tlvF2h_Sgswx0sgj7Vt6aoLozA4C_Q5sj93FrRYbr-s/s1600/me+on+scooter.png" height="320" width="173" /></a></div>
<div class="MsoNormal">
<br /></div>
<div align="center" class="MsoNormal" style="text-align: center;">
<span style="font-family: "Times New Roman","serif"; mso-no-proof: yes;"></span><span style="font-family: "Times New Roman","serif";"></span></div>
<div align="center" class="MsoNormal" style="text-align: center;">
<span style="font-family: "Times New Roman","serif";">My scooter and I, circa 2009.</span></div>
<div align="center" class="MsoNormal" style="text-align: center;">
<span style="font-family: "Times New Roman","serif";">[Image description:<span style="mso-spacerun: yes;"> </span>Me sitting on my scooter outside.<span style="mso-spacerun: yes;"> </span>My scooter has red panels on it and I’m
grinning and wearing a yellow “Honk!” t-shirt and a pink and white baseball
cap.]</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif";">I spent
that summer and the following year learning how to drive my scooter, mainly by
crashing into things and tipping over.<span style="mso-spacerun: yes;">
</span>By the time I started my freshman year of college, I already had an idea
of how the scooter was enhancing my life.<span style="mso-spacerun: yes;">
</span>Over the next three years, my scooter and I became somewhat of a
symbiotic being.<span style="mso-spacerun: yes;"> </span>I knew it and its
quirks intimately.<span style="mso-spacerun: yes;"> </span>It grew and changed
as I did, acquiring many dents, scratches and a seatbelt, as well as a
cupholder for a short time, before a particularly nasty fall cracked the
cupholder in half.<span style="mso-spacerun: yes;"> </span>My roommate even gave
my scooter a name: <span style="mso-spacerun: yes;"></span>“Bob
Scootyscootowitz”.<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif";">Without
my <a href="http://www.pridemobility.com/scooters/models.asp">scooter</a>, I
would have never been able to handle college.<span style="mso-spacerun: yes;">
</span>It acted somewhat like a second, more functional pair of legs.<span style="mso-spacerun: yes;"> </span>I was able to zip from one end of campus to
the other and back again several times in one day.<span style="mso-spacerun: yes;"> </span>I was able to carry food on my lap and wander
around the bookstore or the library during my free time.<span style="mso-spacerun: yes;"> </span>On the weekends, my friends and I would walk and
roll up Main Street and waste several hours in CVS and Dollar Tree.<span style="mso-spacerun: yes;"> </span>Without my scooter, I would have been limited
to my dorm and the immediate surrounding area.<span style="mso-spacerun: yes;">
</span>My scooter allowed me to be a “normal” college student living on campus.<span style="mso-spacerun: yes;"> </span>I feel confident in saying that my scooter
played a large part in my graduation, <i style="mso-bidi-font-style: normal;">summa
cum laude</i>.<span style="mso-spacerun: yes;"> </span>If I had been forced to
walk to my classes all day, every day, I would have undoubtedly been too
fatigued to concentrate and my grades would have suffered.</span></div>
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<span style="font-family: "Times New Roman","serif";">Now that
I’m back home and I have a new power wheelchair, my scooter doesn’t get much
use anymore.<span style="mso-spacerun: yes;"> </span>But my mobility aids
continue to enhance my life.<span style="mso-spacerun: yes;"> </span>I now walk
independently inside the house and use a cane, a walker, or my power wheelchair
or scooter outside the house.<span style="mso-spacerun: yes;"> </span>Because of
my mobility aids, I have gained confidence that I would have never thought
possible just a few years ago.<span style="mso-spacerun: yes;"> </span>I travel
all over the country giving presentations at conferences.<span style="mso-spacerun: yes;"> </span>And because I have a travel scooter, I can
still go into any car.<span style="mso-spacerun: yes;"> </span>My scooter
disassembles into five pieces that can be fairly easily lifted into a regular
car trunk.<span style="mso-spacerun: yes;"> </span>My mobility aids allow me to
have the stamina necessary to travel and enjoy myself.<span style="mso-spacerun: yes;"> </span>In short, going “backward” so to speak, in
terms of my mobility, has actually been extraordinarily beneficial for me.</span></div>
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<span style="font-family: "Times New Roman","serif";">Me with my walker, singing my
heart out, summer 2014.</span></div>
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<span style="font-family: "Times New Roman","serif";">[Image description: Me sitting on
my walker on a wooden stage singing into a microphone.<span style="mso-spacerun: yes;"> </span>I’m wearing a green Disabled and Proud
shirt.]</span></div>
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<span style="font-family: "Times New Roman","serif";">Parents,
I beg you, don’t be afraid of the wheelchair.<span style="mso-spacerun: yes;">
</span>My wheelchair was the best thing that ever happened to me.<span style="mso-spacerun: yes;"> </span>If you even have the slightest thought that a
wheelchair might enhance your child’s independence, get them a wheelchair.<span style="mso-spacerun: yes;"> </span>They’ll thank you for it later, I promise.</span></div>
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<span style="font-family: "Times New Roman","serif";">Soon, I
plan on writing a follow up post debunking popular myths that parents have
about using mobility aids.<span style="mso-spacerun: yes;"> </span>Let me know
if there are any specific myths you want me to address!</span></div>
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<a href="https://fbcdn-sphotos-h-a.akamaihd.net/hphotos-ak-xpf1/v/t1.0-9/10365800_10204192912927318_3735921610988964050_n.jpg?oh=9266f1a6b83ba76d48a2823834ebfcfd&oe=5528F496&__gda__=1432298985_be8b070fe3045b04db81b5236f1777d7" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://fbcdn-sphotos-h-a.akamaihd.net/hphotos-ak-xpf1/v/t1.0-9/10365800_10204192912927318_3735921610988964050_n.jpg?oh=9266f1a6b83ba76d48a2823834ebfcfd&oe=5528F496&__gda__=1432298985_be8b070fe3045b04db81b5236f1777d7" width="240" /></a></div>
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<span style="font-family: "Times New Roman","serif";">Fist pumping at the Society for
Disability Studies conference dance, June 2014!</span></div>
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<span style="font-family: "Times New Roman","serif";">[Me sitting in my power
wheelchair, which has large manual wheels as well, pumping my fist into the air
with a giant grin on my face.]</span></div>
Cara Liebowitzhttp://www.blogger.com/profile/11860032209178249016noreply@blogger.com2tag:blogger.com,1999:blog-6495205444562241273.post-74206370183054368682014-12-22T14:39:00.004-05:002014-12-22T14:39:48.049-05:00#TheShortBus Flashblog: Notes from a Short Bus Veteran<div class="separator" style="clear: both; text-align: center;">
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From the day my mother put me on a bus to a "special needs" preschool at three years old to the day I graduated high school, I rode the short bus. While my older sister walked down the block to the bus stop, I got door to door service, for fifteen years. Even now, I use paratransit, a service my best friend <a href="http://thesqueakywheelchair.blogspot.com/">Kathleen</a> affectionately calls "the distant cousin of the short bus". If there's such thing as a short bus expert, I'm probably your girl.<br />
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When you ride the short bus, everything becomes intensely personal. Riding the bus every day with only three or four others, plus the driver and aide, creates a strange sort of intimacy. Whether you particularly like the others on the bus with you or not, you become a family. Newcomers are regarded with an uneasy distrust. The other short bus riders can become your best friends or your worst enemies, sometimes both at once. Some of my best memories were made on that odd little bus, with our merry band of freaks. Conversely, so were some of my worst.<br />
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<i>Me and my friends Kim and Angelique, short bus sisters, circa 2009.</i></div>
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When you ride the short bus, everything is dysfunctional. Drivers and aides are not held to the same standards, or do not hold themselves to the same standards, as regular bus drivers. The bus was often late, with no apology or explanation. Sometimes they'd veer off the usual route to pick up someone else, or to get coffee, or to do any number of things, again, without a word of explanation. Sometimes our drivers would just disappear, with a new person in the driver's seat one morning, and we'd be left to deduce whether this was a temporary or permanent change. Sometimes things would get downright dangerous. Drivers wouldn't know or care how to operate the wheelchair lift, or how to properly tie down a wheelchair so it won't move when the bus starts moving. I thank the universe that no one on my bus ever got seriously hurt, but there were more than a few close calls. I'll never forget one afternoon in high school, when I was the only student on the bus that day, and the driver sped down streets like a racecar driver, while talking on his cell phone. I cowered in my seat and texted my short bus friends in terror. They felt guilty for leaving me alone.<br />
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But for all the bad apples (and there were many), there were a few good ones. There were a few drivers who laughed and joked with us. One driver would go above and beyond his duty, getting out of the bus every morning in the winter to help me down my icy front steps, and making sure I made it up the driveway every afternoon. <b>The good ones were the ones who regarded us as human. </b>I shouldn't have to applaud basic human decency, but I do, So <a href="http://www.wetransport.com/">We Transport</a>, pat yourselves on the back. Out of the dozens of drivers I had over the years, you produced three good ones. More drivers should be like Patrick, Dion, and Hassan.<br />
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For all its failings, the short bus is more than just a joke or an abstract concept for me. The short bus was where I laughed, cried, and grew. The short bus was where I began to learn that my education was not valued as much as the "normal" students. The short bus was where I was able to crank up my iPod and just be myself. And a few days ago, when I ran into a friend who had rode the short bus with me who I hadn't spoken to in years, we picked up right where we left off. Because there's something about the bond that sharing a short bus creates that can never be broken. The short bus left marks on my heart that will never be erased. I am, and will always be, a proud short bus rider.<br />
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<i>An actual short bus that we actually rode, stolen from my friend Angelique.</i></div>
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<i>Note: This post is part of the #TheShortBus flashblog. If you'd like to participate, submit your post to https://docs.google.com/forms/d/1uVAbIocjqEaIfnEI44I1IIhgm5mLjEr6Kf1lNktvn3k/viewform by January 5th, 2015.</i><br />
<br />Cara Liebowitzhttp://www.blogger.com/profile/11860032209178249016noreply@blogger.com1tag:blogger.com,1999:blog-6495205444562241273.post-36348485103217597922014-10-01T10:47:00.000-04:002014-10-01T10:47:32.484-04:00On World CP DayIt's World Cerebral Palsy Day. Unfortunately, the day snuck up on me this year, so I didn't have time to do a slideshow as I have in past years. You all will have to content yourselves with a post instead.<br />
<br />
I have CP. (Or I'm a Ceep, but sadly that term has yet to catch on in mainstream dialogue.) I have a Bachelor's Degree and am pursuing my Master's. I am in a committed relationship (with another Ceep, but we can have relationships with able-bodied/nondisabled people as well!). I have presented at conferences all over the country. I generally look like I have my shit together (whether or not I actually <i>have</i> my shit together is an entirely different story). None of this, in any way, means that I have "overcame" my CP, as if CP is a hurdle to jump over and, once cleared, is simply a distant memory.<br />
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I inhabit my CP body every day. Contrary to popular opinion, this is not a tragedy. I move about as comfortably in my body as any of you do in yours. Now, this isn't to say that it isn't hard sometimes, or that CP is all sunshine and roses. I spent half the night last night sleeping on the floor, because the lack of space on my bed to stretch my legs properly was preventing me from falling asleep. I have chronic pain and fatigue. But this is my body, as odd and "abnormal" as it is, and I wouldn't trade it for the world.<br />
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Without CP, I would not have discovered the bright and vibrant disability community. I would never have met my best friend or my boyfriend. Come to think of it, I would never have met most of my friends. I would never have found my passion for disability studies and justice. I would not have started one of the only (if not THE only) groups on Facebook exclusively for people with CP - a group that has over 1,000 members and is growing every day. Without CP, I would not be me. Without CP, Cara would be someone completely different.<br />
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I am not a target for your misguided inspiration. I do not need any God to bless me. I am a 22 year old young woman living her life to the fullest and that, in itself, is a radical act.<br />
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[Image description: My boyfriend and I on the Coney Island boardwalk. We're leaning into each other and holding hands. I'm white with light brown hair with sunglasses pushed up on top of my head, wearing a lime green t-shirt and a denim jacket with denim shorts and hot pink Crocs. My boyfriend is Hispanic, wearing jeans and a dark blue Doctor Who TARDIS shirt with a red baseball cap worn backwards. We both are using power wheelchairs.]</div>
<br />Cara Liebowitzhttp://www.blogger.com/profile/11860032209178249016noreply@blogger.com2tag:blogger.com,1999:blog-6495205444562241273.post-39144229722080522372014-08-01T20:46:00.001-04:002014-08-01T20:46:20.631-04:00An Open Letter to The Jekyll and Hyde Club in Times Square, NYCTo Whom It May Concern at the Jekyll and Hyde Club, Times Square, New York City,<br />
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Yesterday, (July 31st, 2014) I attempted to dine at your establishment with four friends. I had heard good things about Jekyll and Hyde and thought it would be a treat, especially since one of my friends was coming from out of town and we were searching for tourist attractions. I was disappointed and appalled with my experience - if an "experience" includes not even being able to dine at your restaurant.<br />
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Four of the five of us, including myself, use power wheelchairs. We were greeted at the door by a hostess who very politely showed us to the lift elevator hidden behind the bookcase by the entrance. The lift was too small to fit more than one of us at a time, so we individually took the lift upstairs, sent the lift back down for the next person, and so on. As you can imagine, this was a laborious process. Once upstairs in the gift shop area, we were shown to the elevator to the dining area. Once again, this elevator could only accommodate one wheelchair user at a time. We repeated the process of going upstairs - one at a time. This all took a good deal of time.<br />
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I arrived upstairs to find my friend looking frustrated. He explained that the staff did not have room for all of us. There were two waiters trying to move chairs to make room. One of them asked me: "How many wheelchairs? Two?" We calmly explained that no, there were four of us using wheelchairs. They told us that they didn't have room and asked if we could get out of our chairs. Disregarding the fact that getting our chairs would have been varying degrees of painful, uncomfortable and difficult for all of us, a wheelchair is generally regarded as an extension of a person's body. Suggesting that a wheelchair user get out of their chair is as disrespectful as suggesting that someone cut off their limbs in order to fit at a table. Additionally, power wheelchairs can cost upwards of tens of thousands of dollars. Leaving our wheelchairs would have meant leaving them in a place where they most likely would have been out of our sight and vulnerable to damage or theft. If this had happened, not only would we have been stripped of our mobility and freedom, but, in the worst case scenario, we would have had to pay tens of thousands of dollars in repairs or for a new wheelchair altogether. That is not a risk any of us were willing to take.<br />
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By this time all five of us had arrived upstairs. We discussed our options. At no time did any of the staff ever apologize to us or offer an alternative solution. We were not valued customers - we were simply an inconvenience. Eventually, we decided to take our business elsewhere. We wasted at least half an hour going up two elevators one at a time, only to be told that we were not wanted. Instead, we took our business next door to Guy's American Kitchen, where the staff were friendly and welcoming. With tip, drinks, and dessert, we spent nearly $200 at Guy's American Kitchen - money that could have gone to Jekyll and Hyde, if your establishment was more accepting. <br />
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For an establishment in the middle of Times Square, where millions of diverse human beings travel every day, the Jekyll and Hyde Club is disappointing, to say the least, when it comes to welcoming disabled customers. You not only lost the business of five potential customers, you have lost the business of many other disabled people who may think twice about visiting your restaurant after they read about the negative attitudes perpetuated by your staff. I plan on leaving negative reviews with a link to this post on Yelp and other review sites so that other disabled people are warned before they encounter the same sort of discrimination we were subjected to. Disabled people are our nation's largest minority. If you want to receive our business, I suggest you train your staff better in matters of diversity. Until then, you will not be receiving one cent from me.<br />
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Sincerely,<br />
Cara Liebowitz<br />
Blogger, That Crazy Crippled Chick<br />
caraliebowitz@gmail.comCara Liebowitzhttp://www.blogger.com/profile/11860032209178249016noreply@blogger.com1tag:blogger.com,1999:blog-6495205444562241273.post-81875635702378785662014-07-27T12:43:00.001-04:002014-07-27T12:44:35.563-04:00The Power of ChoicesWhen I go to a movie theater using my chair or walker, or when I go with wheelchair using friends, we usually can only sit in three or four different spots. In smaller movie theaters, there is often only one spot that can accommodate a wheelchair user, resulting in an awkward dance of politeness or perhaps a duel to the death when - god forbid - there's more than one wheelchair user wanting to see the movie. After my best friend (who blogs at <a href="http://thesqueakywheelchair.blogspot.com/">The Squeaky Wheelchair</a>) was forced to wedge herself sideways behind the back row of seats, nearly knocking off a fire extinguisher in the process, because the lone wheelchair spot was already occupied, we resolved to never go back to that local theater again. But others aren't much better. Sometimes the wheelchair seats are clustered together in one row, making those who need accessible seating feel like we've fallen into some sort of cripple ghetto. Other times, in big multiplex theaters, there are theater rooms that aren't accessible (Roosevelt Field movie theater, <a href="http://blog.ncpad.org/2010/12/20/movie-theater-being-sued-for-not-being-wheelchair-accessible/">I'm looking at you</a>). If the movie you want to see is in that theater, sorry, you're out of luck. And of course no one ever thinks to mention when you're buying your ticket that the theater you're going to is up a flight of stairs...<br />
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It's not just movie theaters, either. When I get on a public bus with my wheelchair, there is a grand total of two spots where I can sit. Both of those spots require that the bus driver ask anyone sitting in those seats to move and then fold up the seats to create space for a wheelchair. People are usually quite annoyed when they are asked to move. It's almost like there's no other spot for them to sit....oh wait, that's me! I don't know of any other minority group that has to force people out of their seats just so they can ride the bus.<br />
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And if I'm traveling with, say, my boyfriend, who is a fellow wheelchair user, the absurdity is doubled. Two wheelchair users, two wheelchair spots on the bus. You do the math. There is no room for error, no room for any other wheelchair users. My boyfriend and I have sat at a bus stop and waved two perfectly good buses on without us, because the bus already had one wheelchair user on board. On the flip side, I have seen drivers turn down other wheelchair users at a stop because they already had two wheelchair users taking up the spots. And I have felt an irrational squirm of guilt for taking up one of those precious spots.<br />
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Sound familiar? Black people didn't stand for being relegated to the back of the bus. They weren't simply grateful that they could ride the bus at all. They recognized what was happening as segregationist and discriminatory. And they made change happen. Have we become so complacent in the post-ADA generation that we fail to remember that we <i>deserve the same rights</i> as everyone else? Have we become hangers-on, clutching at the coattails of the able, thankful just to be breathing the same air as them?<br />
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The power of able privilege is the power of choices. You can sit in this seat or that seat. You can sit in the front of the bus or the back. You can go to that subway station or this one. You can watch this movie or that one, never mind if they have captions or not. You can read that book or this one, regardless of whether the book is available in an alternate format. You have the luxury of moving through a world that presents an endless array of choices to you.<br />
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We have fought for and won our rights. Now it's time for the post-ADA generation to take up the mantle of another fight - the fight for the right to have choices.Cara Liebowitzhttp://www.blogger.com/profile/11860032209178249016noreply@blogger.com2tag:blogger.com,1999:blog-6495205444562241273.post-82550353836677612172014-07-24T22:15:00.002-04:002014-07-24T22:15:59.869-04:00The Trouble With Ableist Metaphors<i>"I was blind to the consequences."</i><br />
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<i>"You need to learn how to stand up for yourself."</i><br />
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<i>"Her pleas fell on deaf ears."</i><br />
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I'm not usually one to language police other people. There are a few terms that I absolutely despise (such as the r-word or "wheelchair bound") that I will usually make a fuss over. Then there are terms like "handicapped" or "special needs" that make my skin crawl, but aren't bad enough, in my mind, to the point where I will speak up. I need to choose my battles carefully, and despite being a word nerd (I have now spent several minutes pondering over the grammatical structure of this sentence), language usually isn't one of them.<br />
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But I was struck recently when, in the course of emails back and forth about inspiration porn and ableism, a colleague used the metaphor "I was blind and now I see." I'm sure he had the best of intentions and didn't even stop to consider the ableist nature of the metaphor - but that's sort of the point. Ableism is so incredibly deeply ingrained in our culture that people use ableist language - yes, even people who should know better, I fully admit that I probably invoke these metaphors far more often that I should - without a second thought every day. I'm not sure that happens with any other form of oppression (feel free to correct me if I'm wrong). <br />
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But wait! I should stop being so literal, shouldn't I? After all, it's just an <i>expression</i>! No one actually <i>means</i> them! Which is all well and good, but as my dear friend K says often, intent is not magic. But the problem comes when we take both the literal and metaphorical definitions and step back to critically analyze what we mean when we say such things.<br />
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The problem with metaphors like "I was blind and now I see" is they overwhelmingly position the disability as the negative. When you're "blind to the consequences", when your voice "falls on deaf ears", when you need to "stand up for yourself", those are all negative situations that should be rectified. In contrast, having your "eyes opened", being "all ears" and "standing your ground" are situations that are generally applauded. Sadly, I never hear anybody being told to "sit their ground". Disability is synonymous with lack of insight, inability to communicate and not having the power or the intelligence to have agency over your own life. Sound familiar? Those are all stereotypes that are associated with all kinds of disability. And now you start to see where, perhaps, the metaphors came from.<br />
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I'm not saying that everyone should automatically cut these types of metaphors out of their vocabulary. What I am saying is that people need to stop and really think about their intended meaning - and then think about how the metaphor portrays disability. If the metaphor is one that positions ability as positive and disability as negative, you may want to consider another term. Because that's the great thing about language - the possibilities are endless.Cara Liebowitzhttp://www.blogger.com/profile/11860032209178249016noreply@blogger.com3tag:blogger.com,1999:blog-6495205444562241273.post-43623660599417977832014-07-02T19:45:00.000-04:002014-07-02T19:45:49.255-04:00R-E-S-P-E-C-T: Find Out What It Means to MeWhen I was being forced out of the education program at my school the spring before last, during a two hour meeting with both my adviser for the field experience portion of the program and my overall adviser, I was told, among many other things, that I was, and I quote: "on the verge of being disrespectful to two women in this room who have PhDs in Education".<br />
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<i>Disrespectful</i>! They were the ones telling me to change my major or graduate without teaching certification. They were the ones telling me I was "belligerent" and that my students would not respect me if I could not stand on my feet to teach a lesson. They were the ones who had upset me so much that I spent the entire meeting sobbing. They were the ones who were effectively telling me that I could not be a teacher. And yet, somehow, <i>I</i> was the one being disrespectful to <i>them</i>. It was like their magical PhDs somehow shielded them from being the ones in the wrong.<br />
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Let me be clear, respect is a two way street, in my view. No one is automatically entitled to respect, regardless of age, job position, or familial relationship. Or maybe it would be better to say I respect everybody - until they disrespect me. Once you disrespect me, all bets are off, because you have shown you are not deserving of my respect. I will not waste my respect on someone who doesn't deserve it.<br />
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And in many ways, my views on respect are shaped by being a woman with a visible disability. Society at large does not respect me and my body. I am expected to submit meekly to the non-disabled population, who, after all, are just trying to "help" me. I am expected to be grateful when I am able to go out and live my life like any other 20-something, because to accommodate me means work for other people. Yesterday, while my boyfriend (also a wheelchair user) and I were out and about in NYC, we experienced so many ableist microaggressions we lost count of how many there were. These included, but were not limited to:<br />
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<li>going into my school and <b>having the security guard ask us if we were going to disability services</b>, despite the fact that I had said at least twice previously that I wanted tech support.</li>
<li>being interrupted in the middle of a conversation with another friend (also a wheelchair user) and being told that <b>if we moved, we wouldn't be blocking the way</b> (note that no one else was told they were blocking the way)</li>
<li>approaching a subway elevator and having a woman who was also waiting for the elevator go in a shocked tone: <b>"Oh my god, two of them!!!"</b> When I pointed out that wheelchair users do actually go places (shocking, I know), she tried to defend what she said.</li>
<li>being told, randomly, in the subway station, that<b> I would be cured if I ate natural foods</b></li>
</ul>
<div>
(On a side note: My last boyfriend, while also disabled, visibly presented as much more able-bodied than my current boyfriend. It's interesting to see the difference in reactions.)</div>
<div>
<br /></div>
<div>
This all happened within the span of 12 hours, and while yesterday was a bit extreme even for my life, these type of things happen to me EVERY. DAY. You can see how that might wear down one's patience. Hence, why I may not always come across as the nicest or most respectful gal on the block.</div>
<div>
<br /></div>
<div>
Respect, to me, is earned, not given. I feel I have a right to be somewhat wary of people in a world that does not view me as a human being with the same feelings and desires as anyone else. I am, of course, always joyful when it turns out I was wrong, and someone treats me well. It is sad that I have come to view basic human decency as a cause for celebration. Perhaps I am a bit jaded. </div>
<div>
<br /></div>
<div>
You want to be respected? Show me you respect me first, because I cannot operate on the assumption that you respect me when so many people don't as a matter of course. I don't care who you are. If you respect me, I will respect you. Simple as that.</div>
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<br /></div>
Cara Liebowitzhttp://www.blogger.com/profile/11860032209178249016noreply@blogger.com1tag:blogger.com,1999:blog-6495205444562241273.post-59199367364782623132014-05-28T23:16:00.000-04:002014-05-28T23:16:34.852-04:00#YesAllWomen: The Life and Times of a Vulnerable WomanI am a vulnerable woman.<br />
<br />
I don't like saying that. I prefer to think of myself as able to handle anything that comes at me, and someone who does most of the normal things a 21 (almost 22) year old woman would do. Vulnerable conjures up images of needing to be protected. I don't need to be protected, or so I say.<br />
<br />
But facts are facts, and the fact is that I am a visibly disabled woman. When I am out in the world, I use a cane, a walker, a power wheelchair/scooter or a combination. I can't move fast, especially when I am nervous or scared. I have trouble getting up from the ground without anything to lean on. My balance is nebulous, at best.<br />
<br />
In short, I am the perfect target for a predator - an easy target.<br />
<br />
In some weird ways, this has protected me. Most guys don't look twice at a cripple, because we're viewed as damaged goods. I've never been cat-called. "Sexy" clothes usually take too much energy for me to put on (I'm a jeans and t-shirt kind of gal), so I don't usually have to worry that men will take my clothing as an invitation.<br />
<br />
But on the flip side, being a visibly disabled woman means that my body is a free-for-all. Since the day I was born, my body has not belonged to me so much as it has belonged to a countless parade of doctors, therapists, and even people on the street who think it is acceptable to ask about my body, make comments about my body, touch my body and move parts of my body. My body and its history are seen as public domain. I have been asked variants of "what happened to you?" by random people (usually men) in smelly train station elevators, in cabs, and on the street. My body is stared at, pointed at, laughed at. Paratransit drivers will, without my permission, physically pick up my arm from my wheelchair armrest in order to fasten the straps, rather than asking me to move my arm myself. Even other women think it's acceptable to ask intrusive questions about my body and touch my body, often with the intention of "helping" me. In the pecking order, those of us with visible body differences are among the lowest of the low.<br />
<br />
Disabled women, like nondisabled women, are used as tools to make men feel good about themselves. Only in our case, it's disguised as "help", and it's not limited to just men. When we complain, we are told that they were only trying to help, that we are ungrateful for not accepting the help heaped upon us, even if it was no help at all. Mundane, every day activities such as dressing or using the bathroom become power struggles, one where we have to "earn" the help we need. We must be nice and polite and demure, even when our rights are being violated, because the world feels we are not entitled to our anger.<br />
<br />
Again, the crucial similarity between the experiences of all kinds of women here is that it's never about the person whose body you're touching. It's about the one with the power, and the one without the power exists solely to validate the other person's feelings. This was the crux of the Isla Vista shooter's problem - he made it all about <i>him</i>. Sure, what he did was extreme, but do we not see how that narcissistic mindset plays out in thousands, even millions of interactions between the powered and the powerless every day?<br />
<br />
No one has the right to touch anyone else's body without that person's permission. But from an early age, disabled women, particularly physically disabled women, are taught that their bodies are the property of others. That it doesn't matter if you're hurting - and that, in fact, if you're hurting, it's probably a <i>good</i> thing. Our bodies cease to be ours and are transformed in a litany of medical and scientific jargon and scribbled notes on pieces of paper. We are indoctrinated to believe that our job is to lie there passively, and be good little rag dolls while our bodies are being yanked every which way. We are not given agency over our own bodies. <br />
<br />
That, combined with the natural vulnerability of many disabled women, makes us ideal targets for abuse. And it shows. According to a <a href="http://www.disabilityandabuse.org/survey/survey-report.pdf">national survey</a> done in 2012 on abuse and disability, over 70% of people with disabilities who responded to the survey had been victims of some kind of abuse. Only 37.3% said they had reported the abuse to authorities, and the perpetrators in less than 10% of reported cases were arrested. And because we are so often directly dependent on other people, we are putting ourselves in potentially abusive situations <i>every day</i>.<br />
<br />
#YesAllWomen needs to <i>mean</i> all women. We cannot keep pretending that the experiences of queer women, women of color, and/or disabled women don't exist, or that the experiences of straight white able women somehow trump the experiences of marginalized women. In truth, all our stories should be given equal weight. We have far more in common than we think, and we are all fighting for the same thing - the power to have agency over our own lives and be viewed as human beings, rather than playthings for the enjoyment of men. If we unite, we will be infinitely stronger, and hard as they may try, no man will ever silence all of us.<br />
<br /><br /><br /><div style="text-align: center;">
<i>"what i would say if you would listen</i></div>
<div style="text-align: center;">
<i><br /></i></div>
<div>
<div style="text-align: center;">
<i>don’t cut off the hand that feeds you, you said </i></div>
<div style="text-align: center;">
<i>another one of your attempts</i></div>
<div style="text-align: center;">
<i>to reduce me</i></div>
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<i>to a small, weak burden dependent on you</i></div>
<i><br /></i><div style="text-align: center;">
<i>it’s not my job you’d announce </i></div>
<div style="text-align: center;">
<i>with your cold glare </i></div>
<div style="text-align: center;">
<i>watching me squirm and suffer </i></div>
<div style="text-align: center;">
<i>when all I wanted to do was go to the bathroom </i></div>
</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<i>you made me afraid to ask for help </i></div>
<div style="text-align: center;">
<i>that I knew I deserved </i></div>
<div style="text-align: center;">
<i>it was your job </i></div>
<div style="text-align: center;">
<i>because you are human </i></div>
<div style="text-align: center;">
<i>and so am I </i></div>
<div style="text-align: center;">
<i><br /></i></div>
<div style="text-align: center;">
<i>your words </i></div>
<div style="text-align: center;">
<i>that belittled me </i></div>
<div style="text-align: center;">
<i>still chill me to the bone </i></div>
<div style="text-align: center;">
<i>what did you gain by hurting me? </i></div>
<div style="text-align: center;">
<i><br /></i></div>
<div style="text-align: center;">
<i>i am stronger </i></div>
<div style="text-align: center;">
<i>and somewhere in my heart </i></div>
<div style="text-align: center;">
<i>i forgive you </i></div>
<div style="text-align: center;">
<i>but i refuse to forget </i></div>
<div style="text-align: center;">
<i>and now </i></div>
<div style="text-align: center;">
<i>i want you </i></div>
<div style="text-align: center;">
<i>to listen </i></div>
<div style="text-align: center;">
<i>to <b>my</b> words </i></div>
<div style="text-align: center;">
<i><br /></i></div>
<div style="text-align: center;">
<i>you were never the hand that feeds me </i></div>
<div style="text-align: center;">
<i>because i feed myself </i></div>
<div style="text-align: center;">
<i>and no one will ever </i></div>
<div style="text-align: center;">
<i>have that power over me </i></div>
<div style="text-align: center;">
<i><br /></i></div>
<div style="text-align: center;">
<i>and for all you made me </i></div>
<div style="text-align: center;">
<i>feel small inside </i></div>
<div style="text-align: center;">
<i>i kept my dignity </i></div>
<div style="text-align: center;">
<i>because it wasn’t yours to take </i></div>
<div style="text-align: center;">
<i><br /></i></div>
<div style="text-align: center;">
<i>remember that, remember me </i></div>
<div style="text-align: center;">
<i>the next time you are careless </i></div>
<div style="text-align: center;">
<i>with things that </i></div>
<div style="text-align: center;">
<i>don’t belong to you"</i></div>
<div style="text-align: center;">
-What Would I Say If You Would Listen, a poem by my dear friend Kathleen of <a href="http://thesqueakywheelchair.blogspot.com/">The Squeaky Wheelchair</a></div>
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Cara Liebowitzhttp://www.blogger.com/profile/11860032209178249016noreply@blogger.com4tag:blogger.com,1999:blog-6495205444562241273.post-90096855936289940092014-04-30T23:35:00.004-04:002014-04-30T23:35:31.585-04:00One Year Ago: What Ableism Didn't Do(This is my second post for <a href="http://tinyurl.com/BADday2014">Blogging Against Disablism Day</a> (BADD). It's a follow-up to my post last year - you don't have to read the post from last year for this one to make sense, but it might be a good idea.)<br />
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<br />
<div style="text-align: center;">
<a href="http://tinyurl.com/BADD2014"><img alt="Blogging Against Disablism Day, May 1st 2014" border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgueOq64ytYHaFMrR67YYZl8UPdMH0wOWOYWvi1W6ebi08hUZ3feNLKLUZO3sBqAr1cMWM31ziwH16uy6T3BoDwL7YAM5eUyE8TxrTb3nIZcMP4Jl83fpS4_AI9bGsFLZfK92DeEo6V5DM/s320/bad02.gif" title="Blogging Against Disablism Day, May 1st 2014" width="320" /></a>
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<br />
<br />
One year ago.<br />
<br />
That's how long it's been.<br />
<br />
One year ago I stood shaking from head to toe in a teacher's lounge bathroom trying not to throw up from sheer anger, shame, and anxiety. One year ago, I listened to you call me belligerent for standing up for myself. One year ago, I heard you say these exact words:<br />
<br />
<i>"I'm forced to conclude that either you've been making excuses, or you haven't been being truthful with us."</i><br />
<br />
Do you remember those words? Do you remember that meeting, that two hour meeting, where you said <i>"This isn't about your limitations, you're the one who keeps bringing them up"</i>?<i> </i>Do you remember how hard I cried? Do you remember telling me that you couldn't recommend me for student teaching? Do you remember how you looked at me like I had three heads when I mentioned the Disability Services Office, and how you skated around the word disability so many times? How I finally snapped and said "You can say "disability", you know. I'm not afraid of it."?<br />
<br />
I'm still not afraid of it. I wasn't then, and I'm not now.<br />
<br />
One year ago, I was effectively kicked out of the education major at a university that is fairly well known for their education program. I was given a choice to switch my major or graduate without teaching certification. Kicked out for no other reason than my disabilities. Because a disabled teacher will apparently lose the respect of her students.<br />
<br />
One year ago, ableism knocked me down. But I got back up. Here's what ableism DIDN'T do.<br />
<br />
Ableism didn't stop me from getting my diploma. In December, I walked across that stage with my head held high, silently shouting "FUCK YOU" to everyone who tried to stop me from getting to that moment. I now possess a B.S in Education - which, given what happened, is an appropriate abbreviation. I don't have teaching certification, but that's okay. I have my own path.<br />
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<a href="https://scontent-b-iad.xx.fbcdn.net/hphotos-prn1/t1.0-9/1486764_10153809425560413_498834693_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="239" src="https://scontent-b-iad.xx.fbcdn.net/hphotos-prn1/t1.0-9/1486764_10153809425560413_498834693_n.jpg" width="320" /></a></div>
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[Short girl wearing maroon graduation robes and cap leaning on a hot pink walker with snowy bushes in the background.]</div>
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<br /></div>
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Ableism didn't stop me from getting a job - two, actually - as a freelance writer for two different websites. It's not a usual job. It's not a job with an hourly wage. It's not a 9 - 5, go into an office job. But it makes me a little money sometimes, which is more than I had before. It gives me hope that someday, someone might want to hire me "for real". Someday, I may be able to support myself. And one of the very <a href="http://www.tolerance.org/blog/third-graders-teach-tolerance">first things I wrote</a>? Was about how accepting the students in the classroom I did my field experience in were of my disability. I said nothing about the attitudes of the adults. Do you feel ashamed, that a group of third graders was more mature than you?</div>
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<br /></div>
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And finally, ableism didn't stop me from going for my dream degree - a M.A in Disability Studies. I've been dreaming of this program since high school and nothing and no one - no, not even you - was going to stop me. I'm nearing the end of my first semester in the program and I enjoy it in a way I never enjoyed the education program. I look forward to going to class each week and I've made some great friends - and even found a boyfriend. Finally, I get to do what I want to do. No thanks to you.</div>
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<br /></div>
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I hesitate to say I've recovered, because I haven't. I hesitate to say I've forgiven and forgotten, because I most certainly haven't. So many nights over the past year, I've lain awake at night obsessing over the events that happened to me, the things that were said. Trying to figure out what the fuck <i>happened</i>. I have obsessed and cried and been unable to get it out of my head. I have launched myself into a full scale panic attack a week before graduation because I knew I'd see you and the others who did this to me. I have been traumatized, and it's sadly not the first time. The scars on my soul will never fade completely. I hope you're proud that you put them there.</div>
<br />
But I've moved on and I'm kicking ass, in my own way. Ableism did a lot of things. But ableism didn't break me. And because of that, you failed. You thought you won, but you didn't, not really. Because I bounced back, a little more bruised, a little more bloody, but I bounced back. I hope someday, something I wrote lands in your inbox and you feel ashamed of what you did to me. A sincere apology would be nice, but more than that, I hope you never treat someone the way you treated me ever again. Change is a powerful thing, and I hope you learn lessons from the things you did to me.<br />
<br />
I'd like to end with a quote from one of my favorite songs, <i>Brave</i> by Sara Bareilles. I don't think it's a coincidence that both this song and <i>Roar </i>by Katy Perry - two absolute anthems against bullying, hatred, and oppression - came out the summer after I was forced out. I don't believe in God, but I do believe in Fate - and I think Fate gave me the tools to get through my experiences. As long as I live, I will fight to make sure no one has to go through what I went through. You fueled my activist fires even more. <br />
<br />
Your mistake.<br />
<br />
<br />
<br />
<div style="text-align: center;">
<i>"Nothing’s gonna hurt you the way that words do</i></div>
<i></i><br />
<div style="text-align: center;">
<i><i>When they settle ‘neath your skin</i></i></div>
<i>
<div style="text-align: center;">
<i>Kept on the inside and no sunlight</i></div>
<div style="text-align: center;">
<i>Sometimes a shadow wins</i></div>
<div style="text-align: center;">
<i>But I wonder what would happen if you</i></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<i>Say what you wanna say</i></div>
<div style="text-align: center;">
<i>And let the words fall out</i></div>
<div style="text-align: center;">
<i>Honestly I wanna see you be brave</i></div>
<div style="text-align: center;">
<i>With what you want to say</i></div>
<div style="text-align: center;">
<i>And let the words fall out</i></div>
<div style="text-align: center;">
<i>Honestly I wanna see you be brave"</i></div>
</i>Cara Liebowitzhttp://www.blogger.com/profile/11860032209178249016noreply@blogger.com8