I have eight credit hours and a grant to study Georgia’s Central State Hospital, once the largest such institution in the world. I plan to seek IRB approval, so it is likely that I will be able to talk to vulnerable people. I am willing to be discrete. This story remains untold to an amazing degree given the number of people involved. I would love to hear from anyone who knows anything. If you would rather not reach out to me on Tumblr, drop me a line at email@example.com. The other way you can help is by passing this on. I need all the signal boosts I can get.
I was not born assertive. I worked my way from meek to shouting at a protest. I was born the most mild-mannered person imaginable. If I had not encountered ableism, I would probably have become an academic, taught English or History, and lived out my days without bothering anyone. The story of the route from then to now will become more public as I have the nerve to contemplate new parts. Personal experience is part of the reason I cannot hold my tongue and tolerate prejudiced comments by a pundit or a donation to Autism Speaks. Beyond the visceral response, I will meet prejudice with anything from gentle correction to overt confrontation. What the offender gets varies case-by-case. What I will never do unless critically low on time and spoons, rarely even then, is ignore it. The stakes are too high.
I cannot leave a dehumanizing word alone when a fellow writer, member of my generation, and apparent nice person appears to be loosing his chance at life because he shares my label. The transplant denial seems to touch on stereotypes that autistics are violent. Within twenty-four hours, a new story of an autistic victim of abuse came out. A man was executed despite an obvious intellectual disability because Texas has a definition thereof both cruel and unusual. A spectator at the Olympics was detained by police. They found him suspicious because he did not smile. Parkinson’s has stiffened his facial muscles. If an autistic person or anyone else of stiff or flat affect had been sitting where he was, the same events would have transpired. This is one day’s news.
The ableist word that elicets a lecture from me may not kill anyone, but the idea, made socially acceptable and allowed to enter the decision-making of all manner of authority figures, plays a part in wrongful, preventable deaths. The assumption that there is one acceptable facial expression per situation is not particularly dangerous in and of itself. In the hands of police, it leads to a random spectator dragged away from a race and detained. It ends a few lives, damages the quality of many more, and sends tendrils of pain out through networks of loved ones. It wounds individuals, families, groups of friends, companies, religious institutions, charity organizations, communities, and society. No, I cannot lay off, shut up, leave well enough alone, or mind my own business. Ableism is the concern of everyone it hurts.
This post is several weeks coming. The concept came slowly, helped along by things I saw, an article on a study, posts. I have run across the problem as a minor theme, but it is rarely stated. It is insidious, so pervasive as to be hard to see. A significant difference between the way able and disabled people are treated in society is time. The paradigms for using irreplaceable hours of life are in opposition. The issue of time is one of the most damaging. It pushes people with disabilities against the current of contemporary lifestyles.
People with disabilities are pushed to constantly improve our weakest areas. This seems to hold true regardless of diagnosis. Some weeks back, I read a few lines by wheelchair user tired of the idea that disability won if he stopped striving to walk. He was physically capable of it, but it was slower, painful, exhausting. It reduced the scope of what he could do in a day. A user who appeared to be a woman of my own age said the same of her cane. Disability won when she did what made her capable. It reminded me of similar responses to accommodations I have had, stories of parents continuing coercive therapies to reduce autistic behavior well into their offsprings’ teens. People expect the disabled to expend time and energy fixing ourselves rather than on useful or fun activities. Overcoming, looking, acting less disabled is the stuff of inspiration porn. I have never seen the people disseminating such stories question the subject’s decisions. Battling disability is assumed to be the best use of our time.
Conventional wisdom encourages the able-bodied and -minded to play to their strengths. People with disabilities are expected to focus on remedying our weaknesses even when the effort is futile. Unaided mobility will not get easier for the bloggers with physical disabilities just because they attempt it. Few allistic people consider an autistic individual’s choice to stop passing a victory. I was recently called entitled for insinuating that we should be free to drop a facade that makes many of us miserable and unproductive.
There are obvious issues with the idea that the best use of a disabled person’s time is to be or look ‘normal.’ It is rooted in ableism. It values one kind of life over others, perpetuates the notion that disability is a synonym for ‘bad attitude.’ The other problem is that the concept also slaps disabled people with a time, energy, and resources disadvantage. If we do the socially acceptable thing, admitting brokenness, trying to repair it, we have less. We have fewer hours, less energy, sometimes less money, often the bad mood that comes from practicing something at which one is hopeless. We ignore pleasurable activities we might share with like-minded enthusiasts, foregoing the chance for connection. We are also at a disadvantage in an economy of specialists. Many of us less time honing our greatest gifts into marketable skills than able people. Those who compete with us have an advantage. We loose one of the blessings of disability: clarity. Like RPG characters who start the game with unevenly applied skill points, our unusual combinations of strengths and weaknesses provide direction in the midst of a career choices unparalleled in human history. If we find what takes advantage of our strengths without requiring characteristics we lack, we may avoid the panic I saw last year as the class of 2014 chose majors.
People with physical disabilities pressured to walk, autistics browbeaten to study social skills in lieu of our interests, and people with intellectual disabilities trained to perform repetitive, one-size-fits-all tasks in sheltered workshops* have something in common: we find ourselves encouraged or forced to neglect talents in favor areas in which we will never excel or which lack the potential for excellence. We are cowards, quitters, slackers, leeches if we exit this rat race to try what we do well. We are socially unacceptable when we perform the act of self-acceptance popular culture pushes on the rest of society in every feel-good movie. This reversal of the conception of wise time management for people with disabilities is a pervasive facet of ableism. It undermines the success and satisfaction of people with disabilities, particularly at school and work. This seems to be a pan-disability problem, harming us across subcategories. Everyone has a right to self-improvement. People should take on traits they can change when they feel those qualities limit them. However, laboring over areas of least talent should not be the bulk of anyone’s day. No one builds a career, hobby, life around the lack of natural inclination. Disabled people are not so unique that our needs are the antithesis of the rest of humanity’s.
*These settings have a history of paying below minimum wage
I want you to stop for a second and think. Think about yourself exactly as you are. Do you want to change who you are? Are you happy being you?
Now, imagine yourself exactly as you are, except you seem to fall under a label. Who knows what this label is? It’s just some label. You don’t mind the label. It’s just there and it describes you so well, you happily embrace it.
Now think of something you can’t seem to help. Let’s say it’s something like a poker-tell or maybe even something as simple as blinking. You don’t notice it and, unless you’re conscious of it 24/7, you can’t control it all the time. Now add on something you don’t like—maybe it’s really loud noises or light too bright to see. It might be something simple that can just give you a headache every once in a while. Because this isn’t “normal” for everyone else, it’s now considered a disorder. Your label is now considered a mental disorder.
But that’s okay because you’re happy with who you are and, if you need help with something that makes every-day life difficult, it will be there because you have a recognized mental disorder.
There’s more here. Let’s say your mental disorder makes you act in a particular way. Maybe you’re a bit meaner than everybody else or you’re too trusting. You know about this, you know how it can be a bad thing, and you’re willing to work on it. It’s just another part of your disorder and despite it, you’re still happy with who you are.
This is you. This is your life. Just imagine that. It’s not really so bad.
Now I want you to think about something else. An organization recognizes your disorder and they don’t like that you can’t live your life just like everyone else. They don’t like that you don’t follow what they consider to be “normal behavior”. So, this organization starts trying to spread awareness of your disorder. Everyone needs to know about how awful your life is because you can’t be normal. They want to cure you and take away not just your little issues here and there, but every aspect of your disorder that, in the way it works, will even change aspects of your personality. They want this cure so bad and want to pressure you to take it whether you really want to change or not.
But weren’t you happy the way you were? Aren’t you proud of who you are? You’ve accomplished so much in your life and don’t even mind working on these little things here and there because it all makes you who you are. That organization just doesn’t seem to want to help you. What’s worse: it’s the only organization people know for your disorder. They all follow it and think it’s doing this great and noble thing. Don’t you just want to live your life as you are?
Now I want you to imagine something different. Think about being really young. Let’s say about 5 or 6. Your parents have told you that you’re disordered in some way. They tell you you have a horrible condition that can’t be cured. They tell you you can’t help this or that. Those little things you work on? You don’t care, now. You can’t help it—or at least, that’s what everyone says. You don’t bother working on it because you truly believe it won’t make a difference. You end up growing up without any confidence and without trying to accomplish anything. Where does your life go from here? What happened? Your parents never knew that, if they had just done things differently, you could have grown up to be exactly as you are now. You could have been proud of yourself and your accomplishments. Instead, you were told you couldn’t do it so many times, you really believed you couldn’t. Instead of growing up thinking your disorder is just another part of you, you think of it as some type of monster inside you. It’s some cancer that eats at your brain and you have no choice but to live at the expense of others. Terrible, right? We should hope nothing like this ever happens.
But this does happen. This is a real thing. These two situations describe the lives of most autistics. I’m one of the lucky ones in the first situation. I’m happy with who I am and the worst I have is this organization that speaks for me but clearly doesn’t understand me at all.
Not everyone is like me. Some live in the second situation. They grow up with so little confidence that they end up dropping out of high school and never going to college because they don’t think they can do it; they don’t see the point. Some are even pulled out of high school by their parents. The most they can hope for is to have some advocate come to help them just to live through a day. They hope that maybe the next day is when they can be cured of what they believe to be this horrible thing in their heads.
What about those that are between the two? Those who have forced themselves to believe what they’re told is false. These are the most inspiring people because they push themselves beyond what they’re told they can do. Many push themselves beyond what they believe they can do. They intentionally endure hardship after hardship because they can’t accept that they’ll never make something of themselves.
Just think about how these people live. Imagine yourself in our situation. Try to understand where we’re coming from and why some of the things you may say or do can really hurt us. Just think about that, please.
You should have. I have been harassing you about it for over a day. Here is information:
Here is the petition again:
If you have not signed it, please do so now. His hearing is in fifteen hours and twenty minutes. If you can, contact the Georgia State Board of Pardons and Paroles at this number:
Or this email address:
Thank you for your time.
The Twitter hashtag for this debacle is #HelpWarren. Sign this petition for the Board of Pardons and Paroles.
Most students at the JRC are sent by the state of New York. Legislators there are considering banning state funds to support aversives, which would pull their students out and leave the institution in financial crisis. It might well have to close its doors. Please encourage them, especially if you are a New York voter.
This photo campaign was launched as part of a student-led project, Accessibility@Elon, to promote disability, accessibility, and Disability Services on Elon University’s campus. Challenge Ableism!
The top image is a college-aged woman in glasses, jeans, and a sweater standing on the open field of an Elon quad. It is captioned “This is what a person with an invisible disability looks like.” Lower in the image are the words “CHALLENGE ABLEISM” spelled out in capital letters.
The left image on the second row is a professor in his office. He is seated at his desk looking at papers. The shot was taken through his open door. The image is captioned “My office is on the second floor of a building that doesn’t have an elevator. How is a student in a wheelchair supposed to stop by during office hours?” Below that, the words “CHALLENGE ABLEISM” are spelled out in capital letters.
The image in the second row on the right is a group of students posed for the picture in rows along with a man a few years older who must be a professor or staff. It is captioned “We are allies to people with disabilities. Are you?” Lower in the image, the words “CHALLENGE ABLEISM” are spelled out in capital letters.
The picture on the left in the third row of images is an Elon student. She is casually dressed, sitting on a low, brick wall that encircles a fountain. She is turned away from the camera so that the viewer can see neither her face nor the front of her body. The photo is captioned “I have a disability. I’m not comfortable being photographed due to the stigma on campus.” Lower in the image, the words “CHALLENGE ABLEISM” are spelled out in capital letters.
The middle picture in the third row is the front of a building. Behind a tall, arching tree, a red brick facade is broken by three stories of Southern, white-columned porches. Stairs lead into the building. On each porch, there is the bottom of two flights leading up to the next level. The image is captioned “What do all the residents of HBB have in common?” A few lines down, the question is answered with the words “None of them use a wheelchair.” At the bottom of the image, the words CHALLENGE ABLEISM are spelled out in capital letters.
The right picture in the third row is the same student from the first picture in this series. She is in the same setting and dressed the same way. This time, she holds a black mesh bag full of prescription medications. The image is captioned “Just because I have to manage my disability with pills doesn’t mean I’m a drug addict - or a dealer.” Below that, the words CHALLENGE ABLEISM are spelled out in capital letters.
The left image of the bottom row is a staff person at Elon. She is seated in a spacious, sunlit office. Her large, wrap-around desk is cluttered with paperwork. The image is captioned “There are over 450 students registered with Disability Services; I am only 1 person.” Below that, the words CHALLENGE ABLEISM are spelled out in capital letters.
The right image in the bottom row is an Elon student. She is wearing a blue, v-neck shirt with decorative gathering and tassels around the arms above a white camisole. She is standing in front of a red brick archway with climbing ivy on the Elon campus. The image is captioned “This is what a person with an invisible disability looks like.” At the bottom of the image, the words CHALLENGE ABLEISM are spelled out in capital letters.
Georgia Arc Network,
We’ve got great news!
The Arc has created the National Council of Self Advocates (NSCA) <http://www.thearc.org/page.aspx?pid=2660> to facilitate greater involvement by self-advocates in leadership roles and advocacy. We value the input that self-advocates from our chapter network can provide towards informing the work that The Arc does.
Three self-advocates who serve on The Arc’s National Board of Directors, Barbara Coppens (CT), Joe Meadours (CA), and Kurt Rutzen (MN), are already guiding the development of this Council, but they need some help to make it a truly powerful national initiative. You may have caught a glimpse of their vision and enthusiasm at The Arc’s 2011 National Convention in Denver or during a webinar they presented in early January 2012.
The next steps are selection of the Advisory Group members (guiding the direction of the Council) and recruiting members to participate in the Council.
That’s where you come in! You are receiving this email because you indicated in the Chapter Profile that your chapter “hosts, sponsors or supports a self advocacy group”. We intend for the Advisory Group to consist of one representative from each state. We want to offer you the opportunity to nominate someone from your local self advocacy group to serve in this leadership role. Please complete this online application form <http://fs16.formsite.com/u024508129ncearc/form62/index.html> by May 20th. Advisory Group members must be members of a chapter of The Arc and should commit to participating in free monthly conference calls. The Advisory Group will play a key role in developing the activities and goals of the National Council of Self Advocates (NCSA) of The Arc. They will shape the future of involvement of self-advocates at all levels of The Arc. Those interested in serving should have demonstrated leadership experience with a desire to uphold the NCSA’s Purpose Statement:
To ensure that individuals with I/DD have a clear voice in creating lives that allow them meaningful choices for a promising future. Including:
Ø Opportunities to be leaders in their communities,
Ø Sharing the values of self determination and building skills for a brighter tomorrow,
Ø Living and participating in society with the same rights and responsibilities as our neighbors,
Ø Educating the community about Intellectual and Developmental Disabilities
The National Council of Self Advocates (NCSA) Membershiprecruitment began in March during Developmental Disabilities Awareness month. Information will continue to be in Fusion (our chapter e-newsletter) and on our website about how to become a member of the National Council of Self Advocates. You‘ll receive more emails soon detailing how you can help your members join the Council. (Free membership is open only to those self advocates who are members of The Arc.) Already nearly 100 individuals have joined NCSA! Our goal is to involve 1000 self advocates from our more than 700 chapters.
If you believe you are not the right person at your chapter to be receiving this – please forward to the Executive Director. Or, feel free to contact Laurie Ertz, Director, Chapter Excellence Group at firstname.lastname@example.org or # 202-534-3708 if you have any questions.
Thank you for your commitment to the involvement of self-advocates in the future of The Arc as together we build a stronger federation and accomplish our mission. Consider nominating one (1) self-advocate from your chapter to serve on the NCSA Advisory Group. NOMINATE by May 20, 2012 <http://fs16.formsite.com/u024508129ncearc/form62/index.html>
The email I copied was to us in Georgia, but it applies to people across the country. If you are or know someone with an intellectual disability, look into it.
Autistics, allies, disability advocates, and disability activists, State Representative Sanchez of Massachusetts has expressed approval of the Judge Rotenberg Center. He has brushed off attempts to question his support of the torture of children on American soil. We are invading his Facebook page tonight. Please participate. People with our labels are suffering on his watch. Innocent kids are shocked until their skin burns. He thinks this is a good idea. Show up. Be civil. Do not make threats. Post your own sentiments or links. Post late at night into the early morning hours. We want him to wake up to this. We want people to see it before his staff can take it down. Please signal boost this message. I hope to see you there.