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Guest Post: Embracing Disability, Struggling for Emancipation, Part two: Dissecting Content and Medium

Eliot Renard is a genderqueer, feminist, socialist Chicagoan who enjoys making math and science accessible and fun for students through various online tutoring programs.  Ze also has a health blog, personal blog and tumblr, because compartmentalizing is fun.

This is the second post of a short series; part one, “Rocky Beginnings,” can be read here.

There is a part of growing up that was never really addressed in my family: leaving home and starting your own family.  When I met my spouse in college, I realized that I had no idea how to become a healthy, emancipated adult; I simply had no examples to work from.  When you throw in the fact that my health began to decline shortly after I began to make earnest attempts at emancipation – and stopped backing down every time I received substantial pushback – the process has frankly been excruciating.

I keep many aspects of my personality secret from my family – as a genderqueer atheist Catholic*, I have decided it is just not worth the effort.  I also imagine that the “I thought it was obvious!” defense would be plausible if I were outed, which assuages my guilt a bit.  Unfortunately, it becomes difficult to hide the extent to which your illness is affecting your life when you are sleeping 15-20 hours per day, and have dropped out of grad school.  Hence, the fact that I have not had a conversation that neither devolved into a frustrating, tear-filled shouting match, nor focused largely on the weather.

As discussed in part one of this series, I have addressed the content of my family’s objections to my “life choices” – because getting sick is obviously a life choice – extensively.  Numerous emails, phone conversations and weekends in my hometown have been devoted to explaining exactly what was wrong with each hurtful, disrespectful thing my family says.  These conversations usually end with my mother suggesting that if I can’t hold down a job, I should just move back home.  Yes, screaming at me, denying my illness, and accusing my spouse of abuse are all meant to make me want to be around that behavior 24/7.

Pursuing a suggestion from my therapist, I have tried redirecting the conversations to the core issues at play – emancipation, healthy boundaries, and the fact that I am an adult.  Given that similar discussions took place before this most recent series of health developments, many in regards to the fact that I went to college 200 miles away from home, got married, then moved to a city 500 miles from home, and that my mother has also dealt with issues concerning emancipation and healthy boundaries, I felt that these issues were worth discussing. I recently asked my mother whether she thought she had a right to know every detail about my life.  Her response terrified me in a way few things have: “Well, you’re the one having trouble.”  The thought that if I ever need help, I may have to trade my basic privacy scared me so much that my vision blacked out.  I had never felt the loss of my family’s support as strongly as I did then.

When my attempt to create healthy boundaries is perceived as an abusive spouse separating me from my family, what actions can lead to a happy ending for all involved?  I am afraid that, by insisting on what I perceive to be a normal, adult life, I am causing substantial pain to my family, who interpret these actions to be the results of abuse.  They are afraid of losing me forever to a terrible situation, and cling more tightly.  I am afraid of losing myself forever by staying.  No one is happy here.  No one is benefiting from this pain.

I don’t know what to do if this continues; I am worried about the effect that being in hopeless situations has on my suicidal and self-harm ideation, especially given that this very situation has triggered both.  I have no control over anyone’s actions but my own, but the idea of distancing myself from my very tight-knit family is disheartening.  Also unfortunate is the fact that if I don’t talk to my grandmother, Uncles A, B and C won’t talk to me, and Uncles D and E will spend any conversation time pressuring me to reinstate contact.  I would also lose absolutely all contact with my brother, niece and nephew.  Sadly, I know that if I chose to play family politics here, I would “win”.  It just isn’t worth the slimy feeling afterwards.

I am working to build a support network outside of my mother’s family.  I have a few very close friends from college and my neighborhood who have helped me tremendously.  I was only at my graduate school for a few months, and was so consistently physically excluded from events that I gave up on forming connections there.  The group of people that has consistently come through on helping me with whatever I needed is spread all over the world, and many of us have never met face-to-face; my friends from various online communities – activist groups, fandoms, friends-of-friends – have saved my life.  Days when I cannot get on the computer (which lives on my bed, along with all of my medications and enough food to last a few days) are rare, and the communities there are amazing – and not always in the inspiring way.  It is in this very community that I came to accept my right to feel angry and defeated at times.  I don’t have to be a “super-cripple,” and that realization is what keeps me going through the bad days.  I am hoping that this ability and time will lead to a healthy resolution with my family.  If not, I already belong to a strong community here.

*Trust me, it works.  You just have to stretch your definition of “cafeteria Catholicism” a tiny bit further…

Guest Post: PWDs and High-Pressure Sales Techniques

Hi, I’m Cydne. I’m a pansexual, biofemale whose gender identity changes from day to day. I have severe mental health problems, and Aspergers too, as well as arthritis and IBS. Joy! I’m a massive Trekkie and a video game nerd, and I usually blog at livebythem.tumblr.com.

There was a day last year I remember quite clearly. I went shopping. I spent 20 minutes talking to one of those guys who proposition people on the street for charity donations. He was collecting for a charity I do not agree with, and he was asking for a donation I could not afford. I ended up donating anyway. About an hour beforehand, I bought some overpriced cheese because the aggressive free samples guy made me feel guilty by handing me the product right after I took a sample. I’d also gone large that day on my McDonald’s order, because I forgot to ask for a medium, and the server said “So that’s a large, yeah?” and I was too embarrassed to say no.

Anyone with conditions like mine will have similar stories to tell. Those of us with social phobia who are afraid of confrontation. Those of us on the Autistic Spectrum who are easily led and manipulated. Those of us with depression who are lonely and just thankful for someone to talk to. We are the ones who are most easily tricked by aggressive sales techniques, most likely to tip high when a server pretends to be our friend, most likely to keep something we don’t want for fear of confrontation upon returning it. Yet, statistically, those of us with mental illnesses are more likely to be jobless, and thus, more likely to be unable to afford the things we buy out of fear and guilt. According to a UK study, only 20% of people with mental illnesses are employed.

It is likely that the companies who instruct and train their employees to act in this manner are aware of the effect they have on us. A friend of mine took a seminar in “Assertiveness and Sales Techniques.” He was taught how to spot weaknesses and take advantage of them in order to sell products. He was taught to be slightly flirty with women who seem to care a lot about their appearance, and taught to act like a kind friend to people who shop alone — especially women who look nervous or unhappy. In short, he was taught to spot psychological weak points and use those to sell goods.

I doubt his experience is a rare one. These multinational corporations pay millions of dollars to research firms to help them improve sales. Sales research groups use psychologists to help them better understand how to sell to people, especially on the case of body language. The effect Autism and mental health issues have on body language is well known. So there’s a fair chance that they know they are harming those of us with mental health problems and Autism or Aspergers, for the sake of sales, both emotionally and financially, similar to how they know they are harming those with body dysmorphic disorder by advertising using only photos of the slim and airbrushed.

It’s the donation soliciting people that affect me the most, I think. They seem to deliberately target me, perhaps because I used to shop alone. I find confrontation terrifying. I find meeting new people terrifying. And I’m terrified of what people think of me. So, when a friendly looking guy approaches me and asks me for “a moment of my time to discuss Oxfam,” I find myself unable to walk away, lest he judge me, or say something to me to make me feel bad in some manner.

They always say things like “it’s only £3 a week, anyone can afford that!,” and I find myself so ashamed of being on benefits and having shopping bags with me, that I have to agree and sign up. Even now, I feel like I should tell you that my bags usually contain pet food or replacement clothing, in case you judge me for how I spend my benefits. Heck, let’s be honest, saying “everyone can afford £3 a week” is pretty darned classist, too.

A day spent shopping may not seem all that memorable to most people. But my day shopping last year will likely stay with me forever, serving as a reminder of my vulnerability. I no longer shop alone. I do my shopping online, or with a trusted companion. I am a vulnerable person, through no fault of my own. This is not about being easily persuaded, or being a stereotypical “shopaholic” female with no money management skills. This is about being ill, and knowing that most companies out there will gladly take advantage of that.

Guest Post: Embracing Disability, Struggling for Emancipation, part one: Rocky Beginnings

Eliot Renard is a genderqueer, feminist, socialist Chicagoan who enjoys making math and science accessible and fun for students through various online tutoring programs.  Ze also has a health blog, personal blog and tumblr, because compartmentalizing is fun.

I began experiencing the symptoms of what I now know to be depression, fibromyalgia and chronic fatigue syndrome when I first hit puberty.  When I complained, the doctor would usually laugh and attribute my complaints to growing pains.  I was told many times by family members and medical professionals to grow up and to stop complaining.  So, I did.  For a decade.

Fast forward to now, and I am once again vocal about my experiences.  This willingness to speak up – to come out as a chronic pain, fatigue, and depression sufferer – has been incredibly beneficial.  I am now on treatments that greatly reduce my muscle pain and depression symptoms, although I have yet to find a solution for many other symptoms.   I have a supportive husband who understands when it’s me speaking and when it’s the pain speaking.  He has adapted admirably to “physical contact rules” that change daily.  He encouraged me to seek out a therapist, which I was reluctant to do after an extremely negative experience with a therapist in my childhood.  He helps me with whatever tasks I cannot accomplish on a given day.  In short, he is a wonderful spouse helping me through a very rough adjustment period.  The rest of my family, however, is problematic.

When my health began to decline rapidly this past summer, I assumed that my mother and grandmother, both diagnosed with rheumatoid arthritis for at least a decade, would understand what I was going through, and instinctively know how to support me.  This assumption was untrue and unfair; being in pain and watching a loved one in pain are two very different experiences.  So, after many conversations in which I asked them repeatedly not to say some hurtful, untrue, and pointless things*, I sent out an email with a list of the offensive remarks, why they were offensive, and a request that the remarks stop immediately.

Unfortunately, this attempt was unsuccessful.  Every phone call was about my illness, and how I wasn’t doing enough to get better – I should be exercising more, undergoing this or that treatment, stopping this or that medication, finding something I “really want to do”, unlike the graduate school I loved and had to leave because I couldn’t get out of bed, much less get to campus and perform a 16-hour work day, being happier, etc.  Things got bad enough that I attempted suicide in September.  It felt like I was not only losing my physical and mental functions, but my family as well.  Nothing I tried was working, and it seemed that there was no way out.

After the suicide attempt, I turned off my phone for a week.  The first person I called when I felt well enough to use the phone was my little brother – he needed to know that none of this was his fault.  My sister’s 6-year-old son happened to be present, so I got to talk to him, as well.  My nephew noted that it had been a long time since we had talked.  I replied that I was sick and needed to turn my phone off for a while.  My nephew’s response was absolutely perfect: “Well, I’m sorry you were sick, but I’m glad you feel better.  At school, I got a dinosaur, and…”

Why can’t the adults in my life figure that out?  Why is treating someone like a person so difficult, not only for my family, but for people on the street or the bus?  Most of my frustration is not actually born from the constant pain, fatigue, fog, etc. – it is from the rest of the world failing to accept me as I am.  And, given the amount of frustration my illness itself causes me, that’s saying something.

*[Bingo, anyone?]

Guest Post: Reflections on being Jewish and Autistic: Different minorities, same critique

Rachel Cohen-Rottenberg is a wife, mother, writer, editor, artist, photographer, and leader of the Vermont Chapter of the Autistic Self Advocacy Network (ASAN). She blogs at Journeys with Autism, and her latest book, The Uncharted Path: My Journey with Late-Diagnosed Autism, was published in July of 2010. Her last guest post for FWD was “I Do Not Suffer From Autism.”

In writing this piece, I in no way wish to imply that my approach is the only approach, that having a religion is better than having no religion, or that Judaism is right and that other paths are wrong. As long as people act consciously and ethically, I really don’t care what they believe, or whether they avoid religion like the plague. I have been involved in social justice work on behalf of all people from a progressive Jewish perspective for much of my life, because that is the culture in which I find myself at home and because it provides me with a useful framework for action. I abhor proselytizing and fundamentalism of any variety; I reject violence, no matter who carries it out; and I support a just, two-state solution in Israel/Palestine, may it be in our lifetimes.

For almost two years now, I’ve become increasingly aware of how other people regard autistics. As you all know, the news is not altogether good. As I’ve waded my way through all manner of error and nonsense, I’ve had the most familiar feeling, as though I had heard it all before. The other day, it finally occurred to me: I’ve encountered the same basic stereotypes and misinformation about Jewish people as I have about autistic people.

All minority people, to some extent, have to endure similar false charges, but the similarities between my experience of prejudice as a Jew and my experience of prejudice as an autist are striking. Here are some of the most damaging myths:

We don’t love properly. In the larger, mainly Christian culture in which I’ve lived my life, the view seems to be that the Jews of the “Old Testament” were all about strict justice, and that the Christians of the “New Testament” were all about love. (I put the names of the books in quotation marks because I don’t see one as being old and outmoded and the other as having superseded it; I see them both as valid traditions in their own right.)

The Jewish God, the critique goes, is only a God of judgment, a God of punishment, a God who lacks forgiveness, and we are just like our God: cold, judgmental, merciless. The Christian God, on the other hand, is a God of love and forgiveness. When I was growing up, without much of a Jewish education, I actually believed all of this. I believed it until I was in my late thirties, and I asked a rabbi whether there was anything in Judaism to help me heal my broken heart. His reply? “Yes. Our people brought the truth to the world that there is a God who loves us and cares about our lives.” I nearly fainted. When I began to study and practice Judaism in adulthood, I was startled to find that we are instructed to love our neighbors, to love our enemies, to love mercy, and to make right the wrongs of the world.

And what did I believe about autistic people until I found out that I actually am one? I believed that autistic people don’t have empathy, the very basis of loving relationships. The lack-of- empathy trope has been at the core of autism theory for a number of years, and it’s appalling how many people still believe it. Of course, they don’t appear to have met any of the autistic people I know, nor do they seem to have much empathy for the pain and suffering this canard causes autistic people on a daily basis.

We think terms of black and white. Now, the interesting thing about this particular myth is that it betrays some pretty black-and-white thinking on the part of the people who accuse us of black-and-white thinking. For example, when people say that Jews are only about justice, it’s justice of a kind that brooks no shades of gray. Christians, on the other hand, are said to be all about love, which encompasses many, many shades of gray. But the truth is that Jewish tradition has always been concerned with a concept called tzedakah, which is essentially an action that combines justice (righting a wrong) with love (easing and, ultimately, healing the suffering of other beings). We do not think in black and white about justice and love; in fact, we combine them. To split them apart is an example of black-and-white thinking at its best.

Now, consider the myth that autistics think in black and white, usually expressed as our being all about logic and systems. In fact, some researchers believe that we have Extremely Male Brains that are high on systemizing, while non-autistics have brains that are high on empathizing. And yet, when I look at my own life, and that of other autistic people, I often see a capacity for high levels of both systemizing and empathizing, and I see them working together. We don’t split them apart. Other people do, and then they tell us that we’re the ones with the black-and-white thinking. It’s enough to make you weep.

We are excessively logical. Many people believe that Judaism is all about “legalisms,” and that it does not concentrate on coming from the heart. This particular myth is very old and very intractable, in part because most people believe that Judaism begins and ends with the “Old Testament,” ignoring thousands of years of mysticism, story-telling, discussion, ritual, and practice that are all about opening one’s heart. I’m not saying that all Jews come from the heart, any more than all Christians come from the heart. I’m saying that Jewish culture has its own ways of combining head-thinking with heart-wisdom that are little known or understood by others.

Of course, autistics are constantly stereotyped as being overly logical—except when we’re stereotyped as being out of control. And yet, somehow, we manage to have friends, families, relationships, children, and ethical lives.

We insist upon being different. For a number of years, I wore garb that clearly identified me as Jewish. For awhile, I wore a yarmulke and tzitzis (ritual fringes) every day, all day. During another period, I only wore headscarves and dresses. I now dress in a thoroughly secular fashion. When I didn’t, I got all kinds of attitude about “setting myself apart.” Of course, I wasn’t setting myself apart. I was just being myself. And I wear what I wear now because I am just being myself.

I grow. I change. I morph. I explore. I’m inconsistent. I’m human. Go figure.

Not surprisingly, I have gotten similar messages regarding my autistic sensitivities to all things sensory. I’m told that I’m “choosing” to be so sensitive, that I’m setting myself apart, when I’m really just being myself. And when my sensitivities are not as troubling, I’m also just being myself.

I grow. I change. I morph. I explore. I’m inconsistent. I’m human. Go figure.

Other people are normal, and we are abnormal. Many years ago, when my daughter was small, her father used to pick up one of her friends after school and bring him home. One December, on the way home, the young man said, “We celebrate Christmas at my house. We don’t celebrate Chanuka. We’re not like you. We’re normal.” My ex-husband took the long way home and patiently explained the concept of diversity to the young man until he got the picture.

And of course, we autists get stuck with the “abnormal” label all the time—more evidence of that dualistic, black-and-white thinking that “normal” people aren’t supposed to engage in.

We are all alike. In response to all the many myths surrounding Judaism and Jewish people, I did interfaith work for a number of years, teaching workshops in areas schools and churches. Some of the most common questions I got began with the words, “So what do Jews believe?”—as though we all believe the same thing! That was the moment I’d introduce the mantra of “You get two Jews in a room, you get three opinions.”

Likewise, it seems, people have an excessive need to see autistic people as being all alike. It usually expresses itself in terms of narrowing the definition of what autistic means. (I recently saw a YouTube video in which the mother of an autistic young man actually said that you can’t be autistic if you can speak. I was flabbergasted. ) At other times, this need to see us as alike expresses itself in conclusions by researchers that autistic people are a collection of deficits and impairments without any strengths at all. If we have strengths, they are usually called “splinter skills” (a term I despise, even though it’s got some cool alliteration and assonance going on).

Of course, we’re as varied as any other group. I’m not sure what kind of impairment, oops, I mean, neurological difference keeps people from seeing that variation. It might be interesting to do some genetic research on the matter.

We are not fully human. I first became aware that some people believe that Jews are not fully human when I was in Hebrew school and saw a piece of Nazi propaganda in which Jews were likened to vermin. I felt such pride in who I was that I just couldn’t believe my eyes. Who could really think that Jews weren’t people? Apparently, at certain times in history, a great many people.

I was reminded of this experience when I happened upon some writing by Dr. Ivar Lovaas, the psychologist who pioneered the treatment now known as Applied Behavioral Analysis. In discussing the basis of his treatment, he wrote of autistics in 1974:

“You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense—they have hair, a nose and a mouth—but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person.”

I shudder to think of how many people still believe this kind of thing.

Of course, Jews, autistics, and members of any other minority group share similar experiences: we are vulnerable no matter how well we “pass” and live up to the standards of the larger culture, and we constantly have to fight against the appropriation of our own voices. Moreover, the solution to whatever problem we appear to pose consists of attempts to do at least one of the following: a) efface our differences to make us indistinguishable from others, b) demand at least a pro forma conversion to the dominant paradigm, which means that we can stim/rock back and forth in prayer/be ourselves, but only out of the public eye, or c) isolate us in ways both visible and invisible.

There are many, many autistic people who cannot do a “pro forma conversion,” who cannot “pass” as I do, and who have endured severe levels of bullying, assault, and isolation as a result. I shy away from the word Aspie and I use the word autistic to describe myself in order to make common cause with people across the spectrum (in the same way that I refer to myself as a Jew, not a denominational Jew, in order to make common cause with other Jews, no matter how differently they may think and practice, and how vehemently I may disagree with them). I will continue to do both. I have Asperger’s Syndrome, and that makes me autistic. I had Jewish parents, and that makes me a Jew. I may present differently from others in my group, but then again, so do trees and birds and rocks. Why should people be any less diverse than the whole of creation?

[Interested in guest posting for FWD? Please see our Guest Posting page for more information!]

Guest Post: I Do Not Suffer From Autism

Rachel Cohen-Rottenberg is a wife, mother, writer, editor, artist, photographer, and leader of the Vermont Chapter of the Autistic Self Advocacy Network (ASAN). She blogs at Journeys with Autism, and her latest book, The Uncharted Path: My Journey with Late-Diagnosed Autism, was published in July of 2010.

I do not suffer from autism.

I suffer when someone calls my way of being a disorder.

I suffer when others invest time and money to prevent people like me from being born.

I suffer when anyone suggests that I might recover or be cured.

I suffer when others feel sorry for me or for the family I have created.

I suffer when I fear that people will consider me broken.

I suffer when my being autistic scares people away.

I suffer when others try to silence me.

I suffer when people suggest that I do not have all the same feelings they do.

I suffer because I must describe my way of being by referring to a medical diagnosis.

I suffer because I live in a society that does not celebrate difference.

I suffer because I live in a culture that does not cultivate sensitivity.

I suffer because I live in an environment that values appearance over substance.

I suffer because I live within a social order that calculates human worth based on productivity and conformity.

I suffer because I live in a world that does not honor the gifts that autism brings me.

I suffer because I have learned to apologize for who I am.

But make no mistake: I do not suffer from autism. I do not suffer from who I am.

[Interested in guest posting for FWD? Please see our Guest Posting page for more information!]

Guest Post: Stuck and tired: How universities are failing disabled students (like me)

Diane Shipley is a freelance writer obsessed with feminism, US TV, memoirs and pizza. She writes about those things and more at her blog, the imaginatively-named Diane Shipley Blogs (http://blog.dianeshipley.com) and is almost always on Twitter (username: @dianeshipley).

You’re intelligent, personable, and get good grades. It might look like higher education is a given.

But it isn’t. Not when you have a disabling illness. Then, making it to graduation could be more challenging than you ever imagined.

Last year, I tried to finish the degree I dropped when I got ill back in 1998. The disability services department at my new university contacted me the summer before I started my course, asking what extra help I would need.

I had never been a student with disabilities before, so I couldn’t anticipate all the challenges I might face. But the system for reporting those I was aware of seemed doomed to failure: a disability advisor emailed my department in the first week of the semester to advise them that I needed my seminars and lectures to be accessible. Inevitably, this was too late. One of my lectures was in a building with a lift that was almost always out of order, leaving me the choice of missing out or making myself ill. And my registration experience was disastrous.

Registration and enrolment were in two separate buildings nowhere near each other. As no buses ran in that direction, this meant a fifty-minute round trip on foot, well beyond what I could cope with. So I emailed the university to explain this, asking if I could register and enrol online, instead.

Here’s where I point out something that should be obvious but seems not to be: when disabled students express a preference, it shouldn’t be brushed aside in favour of what administrative staff would prefer. Being assertive can be very difficult, especially in situations where someone has power over you. Expressing one’s needs can also be embarrassing, as many long-term illnesses and disabilities are stigmatised. It’s an issue that deserves to be treated with sensitivity, but too often isn’t.

Instead of granting my request, a member of staff from registry services suggested I meet her late in the afternoon, instead. Because her address was at the end of her email, and was somewhere I could access by bus, I agreed. But when I went to her office at 5 PM on registration day, the shutters were closed. Tired, upset, and alone, I vented on Twitter: “I don’t think this university cares about disabled students.” Then I called my mum in tears and she offered to leave work and drive me to the building where registration was taking place. I finally made it and explained the mix-up to one of the staff, who said someone there wanted to speak to me.

The head of registry services strode over and introduced herself, a stern expression on her face. She then shouted that I couldn’t say what I liked on Twitter without giving them “right of reply” and that the university did care about disabled students. “I’m fully conversant in equality law,” she snapped. When I mentioned the mix-up over where I was registering, she said that perhaps I should read emails more carefully in future.

She wasn’t wrong: I could have double-checked. But in my defence, starting university was an overwhelming undertaking, and confusion and anxiety are big parts of my illnesses. I had also made the mistake of assuming that no-one would suggest we meet somewhere I had specifically said I couldn’t access.

I was finally able to register but because of the delay, I couldn’t get into the student intranet until two days later, so the seminars I wanted to sign up for were full. This meant that instead of organizing them at times to suit my illness, I had to take whatever was left. When I contacted my departmental disability liaison officer to ask if I could be squeezed into more convenient seminars for a couple of subjects,  he demurred, and I got the impression he thought I was trying it on. I didn’t have the energy to argue that this seemingly small issue was essential to the management of my illness.

As I thought I would, I struggled with my schedule.  Ten hours of class time isn’t much, but I hadn’t counted on the extra time I’d need to walk to lectures (and then sit down and catch my breath). In retrospect, I needed to take taxis to my classes. But I was reluctant to organise this because one of the disability support staff told me that some taxi drivers were “funny” about short journeys.

But my biggest challenge was the fire alarms, which went off once or twice a week. We would traipse out of the classroom, walk down three or four fights of stairs, stand around for ten minutes, and then go back up again. I had no idea what disabled students were supposed to do, and didn’t know who to ask, so I just struggled on, my muscles spasming from pain and stress.

I know what some people will think: maybe I was too ill to be at university in the first place. But I had a good reason for attempting it: money. In England, if you’re on a full-time course, you are entitled to loans, grants, and bursaries, which add up to (just about) enough to live on. A part-time student is only entitled to £225 a year. So I took a risk.

It’s a risk that failed. Although I could cope academically, physically I was falling apart. After five weeks, I suffered a severe stress-induced relapse and the university recommended I take a leave of absence. This meant I wouldn’t have to reapply if I felt well enough to return, but I wouldn’t be entitled to student finance or disability benefits during this time, either. I only scraped by thanks to my overdraft, a little writing work, and my supportive parents.

This summer, I had to decide whether or to go back. I decided against it. I didn’t feel well, and I didn’t feel welcome.

I don’t think my experience is unique: I suspect it is more common than universities realize. The way I was treated is part of a much larger problem: how we, as a society, view people with disabilities. We need to stop being surprised when someone has special needs, and there needs to be a socially acceptable way of saying “I can’t do that,” or “I need more help”, especially in educational institutions and the workplace.

Policies like the British government’s plan to reduce the number of people claiming disability benefits (without regard for the number of people with disabilities) perpetuate the sadly still prevalent belief that those of us who have disabling illnesses which are not terminal or immediately visible are lazy, when nothing could be further from the truth.

The fact is, students with disabilities need better support. An attempt to understand and cater to students’ individual needs rather than just paying lip service to the idea of equality would be an excellent start.

Guest Post: Matchstick Girl

Amy Gravino is a certified college coach for individuals with Asperger’s Syndrome, and is diagnosed as having AS herself. She is currently attending graduate school at Caldwell College in Caldwell, NJ, where she is working to obtain her Masters degree in Applied Behavior Analysis. Amy is also authoring the book, “The Naughty Autie,” which chronicles her experiences with dating, relationships, and sexuality as a woman on the autism spectrum. (For more information, please visit www.amygravino.com.)

Editor’s Content Note: This post discusses being locked in a closet, and may trigger a claustrophobic reaction.

It all starts with a doorknob.

The palm of my hand wraps around cool metal. Smooth and solid against my skin, gaining me entrance to my place of peace. I can hear the other children’s voices somewhere distant, far away on the Big Toy. They play outside, running over hot blacktop, skin freckling in the sun.  But I am in here, in the dark.

I move into the closet slowly, acutely aware of my Velcroed sneakers touching the tiled floor, one step at a time.  The shoes are too tight, and my feet are throbbing and cramped. They’re trapped, along with the rest of me.  My muscles are tense and twisted in preparation for the onslaught of adolescence soon to come.  I’m in the middle of the closet now, standing right below the light bulb. Without hesitation, I sink to the floor and arrange myself in a cross-legged position.  I have no concept or inkling that any of what I am doing is not normal.  I don’t even think that anyone notices me retreating in here day after day. I’m a matchstick girl—legs spindly and awkward, all too sensitive, waiting to be set alight by the outside world.

I try to breathe, for what seems like the first time all day. Tiny hisses of air pass through my clenched teeth, which are aching behind omnipresent metal braces. I can feel the blood rushing through my gums to the enamel, and back again.  So much awareness, and yet it is this same awareness that fails me when I try to interact with my peers.

Thoughts of past and present social failings dart through my mind, each delivering a momentary but painful sting: a student’s science project in Mrs. St. Pierre’s classroom two years ago.  A flood of red, followed by a loud rumble and a hiss from a homemade volcano sends me running out of the room screaming.  Gym class two days earlier: a silent mantra—I will hit the ball this time, I will hit the ball this time. And I did—with my face, courtesy of an intentionally too-hard lob from the other side of the net.  Home Economics, one year ago. Untrained hands move clumsily, twitching from the sewing machine’s vibrations.  I’m bent too far over, and it’s only seconds later when a mousey brown strip of my Rapunzel-esque hair catches beneath the needle.  My classmates stand nearby, taking in the spectacle, making no move to help me.  While I shriek, they laugh.

The emotions that poured out of me in each of these situations come back to me now, as powerful as they were when I first felt them.  I become so lost in my anything-but-pleasant reverie that I do not notice the closet door slowly shutting behind me.  The sudden click of the lock jolts me upright.

“Haha, you’re locked in the closet!” one voice jeers.

“You’re not allowed to come out!” another joins in.

Two girls. Ella Ringway and Kelly Rockpoint. I recognize them immediately. Why are they doing this? What did I do wrong? I grab the doorknob and it turns, but the door won’t open. A swell of panic rises in my chest.

“Please, let me out! Please!” I cry.  But the taunting continues.  With all the might my miniscule form can muster, I push against the door, but their backs are up against it on the other side, and I feel the weight of their bodies countering my efforts.

“Come on, you guys! Let me out of here!” I again implore. But they ignore me, and I can hear them laughing at my expense. My safe haven is now a prison, and I cannot escape.

Eventually, Mrs. Plotz, the math teacher whose closet I am trapped in, arrives, and sets me free, shooing Ella and Kelly to their desks so that class can begin. I emerge from the closet as slowly as I went into it, nerves destroyed and heart scarred from my ordeal. My sadness and anger are barely concealed as I find myself forced to complete long-division problems with my former captors.

You call this justice? Does the Geneva Convention mean nothing to you people? I wonder while fuming silently.

But this was middle school, and there was no justice to be found. Not for anyone, but especially not for me. This continued all through high school, unrelenting, unending. I was, I thought, trapped in an invisible closet, one of my own making, unable to connect to anyone or anything. It is only years later that I now see how they were the ones truly in the dark.

This precise memory—of the closet, of being locked in by my peers—has not passed through the fore of my mind in a long time.  It had no reason to until last year, when I received a message on Myspace from Ella herself. I was surprised more than anything else, and did not know what to expect when I started to read it.  What could she possibly have to say to me? We had neither seen nor spoken to each other since graduation, and I couldn’t imagine why she would have a need to write to me.  It was only after I’d read the entire message that I realized she had apologized for how she’d treated me. She said she wished she’d known more about Asperger’s syndrome at the time, and that maybe if she had, she would have acted differently.  But the would-haves and could-haves meant nothing to me.  What did mean something was that, out of all the people who’d tormented me back then, Ella was the only one who had the courage to come out and apologize for it.

Sometimes I can still feel the closet around me.  The odor of mildew and old math books collecting dust is as strong in my mind now as it was then, but other smells now provoke other memories. They are locked up tight, while I sit in front of the door to keep them from getting out.

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Guest Post from Lisa: Invisible Ableism

Lisa Harney is a single lesbian with ADHD, three cats, and a penchant for writing about social justice and transphobia. She blogs regularly at Questioning Transphobia.

So one of the most frustrating experiences of coming to terms with my disability is realizing just how much ableism has impacted my life without my realization. I mean, I knew that this stuff was not really fair or reasonable, but I didn’t really know why.

When I was in the first grade, my teacher told my mother she thought I had a learning disability. My mother’s goal was to prove that I had no disabilities at all, so she had my intelligence tested and I was categorized as “gifted.” It was also determined that I was nearsighted, which required me to wear glasses. Somehow, unfortunately, neither of these solutions actually helped with my problems: I had trouble retaining what the teacher said to me, and I had trouble doing all of my schoolwork.

In retrospect, being marked as gifted was mostly negative. It meant I had more pressure to perform well, that I should be a straight A student, but I never managed this. My report cards are littered with “doesn’t pay attention” and “doesn’t apply herself” and other negative assessments that read to my parents as “Lisa doesn’t fulfill her true potential.” Now, of course I wanted to, but to me grades felt almost like an arbitrary lottery. I never got grades commensurate with the effort I put into class, and no matter how much effort I did put in, I’d get in trouble when my report card had too many Cs and Ds. There was a reason I could make it to the spelling bee state finals and do calculations in my head, and yet still couldn’t maintain any kind of consistent quality of work.

This had repercussions at home. I learned from my father that I was stupid, lazy, inconsiderate, and selfish. I learned these lessons really well. I internalized them. Somehow I was convinced that I was really sabotaging my own school work. His conviction in my potential wrongdoing was such that he would grill me about what I did at school every day once I got home, and the right answer was always “I didn’t do my schoolwork.” If I said I did, I’d be punished for lying. So I learned to lie to him because the lie was the only acceptable answer. And he convinced me I was an inveterate liar, so it was interesting to realize once I got out on my own that I was total rubbish at it.

So yes, from most of my teachers as well as my father, I learned that I was pretty worthless; that I was stupid and lazy. That my problem was that I refused to apply myself and spent too much time daydreaming, or reading novels, or playing games (role playing games, mostly). That everything I enjoyed was a personal flaw, and that everything I failed at defined me. And this has stuck with me for a long time.

This carried through into my first long-term relationship – which was also abusive. But my partner liked to especially pick on my inattention, my tendency to zone out in the middle of a conversation, my forgetfulness, and insisted on treating me as if I was a child to be controlled instead of her girlfriend. She went beyond this, but this itself is apparently a common pattern in relationships with ADHDers – that a parent-child dynamic develops. This is often framed in articles and literature and by non-ADHD spouses and partners as something the ADHDer is totally responsible for, and relationship problems are often blamed entirely on ADHD, but the non-ADHD partner’s ableism is practically never discussed. And being treated like a child, having every mistake scrutinized and berated and everything you do ignored and forgotten takes a huge toll on you. It’s abusive. My partner was abusive in many ways beyond this, so I don’t want to make it sound like her ableism fueled all of the strife, but it definitely had an impact.

Every attempt I made to enter college hit a wall. I would do really well (and learned I was not in fact lazy or stupid) until I couldn’t anymore. I don’t really know how to describe it. I wanted to get my degree, but once I hit that point, college went from doable to extremely difficult. It may have been changes in routine, greater difficulty in classes, overall stress from spending that much energy to excel constantly without a break. I don’t really know. I just know that I would hit a point beyond which it was very difficult for me to continue. And that I didn’t even know how to find support or assistance, that I don’t feel resources for this were really clearly explained to me if they existed at all. And besides, maybe I was lazy and stupid, right?

Most of my jobs went the same way – I’d do a job well until I couldn’t keep it up any longer, and I’d often have to quit because simply going in was difficult. Again, this is hard to describe, how this works. It is not that I wanted to lose my jobs or that I did not enjoy them, but that I’d end up being unable to continue, or that I’d find it difficult to meet basic requirements like punctuality. And I’d be left wondering how I could have sabotaged this amazing job, and how lazy and stupid I must be and how much I must hate myself to make these choices.

And this really was a spiral of self-hatred and recrimination that continued until the past few months. That I was holding myself to standards I had no idea I couldn’t attain without help, medication, accommodations. That my knowledge of ADHD, the background cultural knowledge was so lacking in information that I really had no idea how to start looking into this, or even that there was anything to look into. I spent more time wishing I had done everything better, that I hadn’t made so many mistakes, that I hadn’t lost two promising careers, that I hadn’t apparently done everything in my power to block my own success. That I had no idea I was not only limited because of my neuroatypicality, but because there simply wasn’t any easily accessible information that would have helped me realize what was happening to my life. Even when I saw doctors about my GAD and panic disorder in 2003, the possibility of ADHD never came up.

Since I wrote my two posts about ADHD on Questioning Transphobia, I’ve had several people tell me in comments, e-mails, or chat that they related strongly to the symptoms I described, that by making my experiences with ADHD accessible, people who have been undiagnosed so far – who might themselves have ADHD – know about the possibility and can respond to that information. According to at least one researcher – Dr. Russell Barkley – it is possible that only 10% of ADHDers who have gone undiagnosed into adulthood are diagnosed as adults.

I am not saying that experiencing ableism without even realizing you have a disability – let alone what ableism is – is worse than experiencing ableism when your disability is known. Just that it was a dark moment for me to realize how much of my life has been defined by ableism, and how much I had no defense mechanisms at all to cope with that and how much I had to realign my own understanding of decades of my own life. The end result is good, in that I was able to resolve a lot of my own self-hatred, but the realization itself was a bit shocking.

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By 29 September, 2010.    guest post, identity, introspective, invisibility  ,  



We also have the right to be in public

This is a guest post from Thetroubleis, a knitting, writing, dog training, queer uppity negress who enjoys writing about race, madness, disability, adoption and the intersections of the aforementioned subjects. She is a big geek who spends good deal of time raging against fandom and canon underrepresented of marginalized people and squeeing about new episodes. You can find her writing at The Trouble Is…

I’m disabled. I do weird things that bother other people. I have trouble controlling the volume of my voice and I use a service dog. I’m easily distracted and have a tendency to become very intensely focused on one thing. I hate certain buildings and noises, they make me want to crawl out of my skin or scream until it stops. I can’t tell you why they’re wrong, but I simply know they are. Sometimes, fear sinks its claws into me and doesn’t let go until its had its merry way.

These things bother abled people quite a bit. Ever since childhood, I’ve been judged for not preforming humanity correctly, as anyone who wants the basic decency afforded a real person should. Reading at the dinning table to avoid a freakout is disrespectful. Refusing to look people in the eye must mean I’m hiding something. Making my mom order for me because I couldn’t stand to talk to strangers was freaky and just not right. It cannot be allowed stand and thus, I had to be molded, to become more normal. The discomfort of others with my natural state was always more important than anything I could need.

I preform better now. Most people can’t tell I’m not neurotypical anymore, unless I’m having a panic attack or am in the arms of mania. I haven’t had a screaming fit in public in years and I walk up stairs normally now. Yet, I’m still off. Even the things I do to cope, so I won’t behave in a manner that will end with me being locked back up, are judged far too often.

This is ableism.

Knitting through stressful situations, or to keep focused, seems to really bother abled people and non-knitters. Out of courtesy to other people with attention problems, I even try to use quiet needles and keep my knitting under a desk if I’m sitting at one. Yet, every time I’ve been scolded for not paying attention, I’m simply told I’m being distracting, without any understanding that I’d be willing to work around other people’s needs. Often I’m pretty sure I’m not being scolded for being distracting, but for the possibility of it. Because what I need to do to get by is weird, so of course it’s my fault when people gawk.

I have a service dog, in training. His name is Figaro and he’s the best thing that has ever happened to me. The general public is not so sold on him. Every time we go out, snarky comments start up and I live in area that’s pretty service dog friendly, thanks to the efforts of our program and other handlers. This behavior isn’t even coming from gatekeepers, but from people who seem generally angry if they see Figaro. Admittedly, he’s not perfect, but his worst behavior is slipping out of a heel or popping up from a down. The act of him simply lying under a table while I eat seems to be an affront to the proper way of doing things.

These are just stories from my life. Other people with disabilities deal with other situations, some much, much worse than mine. Policing of behavior is a chronic thing for many PWDs, regardless of the actual effect of their behavior of other people. The abled community has its standards to uphold and some girl having her dog lay on her to calm her down is too weird to let stand. People end up locked up because of these standards. People end up dead. We end up cut off from any real support any coping methods we may have had, all in guise of conformity.

One would think feminists, who I hear aren’t too keen on the policing of womens’ behavior, would see the parallels in policing the behavior of other marginalized people. Really, truth be told, the feminist movement has never been very good at being inclusive, at understanding intersecting oppressions. Therefore, I’m not very surprised, just further disappointed. This happens time and time again in various movements sold as progressive.

All people, have the right to public spaces, even people who annoy you. Sometimes, because of conflicting access needs, compromises need to be made, but shunning people who don’t preform correctly isn’t compromise. It’s just more of the same bigotry. We no longer have ugly laws but people still attempt to enforce the spirit of them. Ableism isn’t feminism, so if you’re abled, actually listening to PWDs? It’s a capital idea.

Guest Post From Jesse the K: Making Space for Wheelchairs and Scooters

Jesse the K hopes you can take a disabled feminist to tea this month. Her previous guest post was 20 Years and a Day for the Americans with Disabilities Act.

Originally Posted at Access Fandom.

These guidelines come out of my experience working on WisCon, a 1000-person annual convention in a recently remodeled hotel.

There are many elements to making your event wheelchair-accessible. While U.S. law requires minimal wheelchair access, never rely on a venue’s general assertion of “oh yes, we’re accessible.” Those little wheelchair stickers? Anyone can buy them and post them at will, even at the bottom of a flight of steps.

There’s an entire shelf of 2-in (5,08 cm) thick books on this topic; so consider this the Twitter version. Links to helpful resources appear on June Isaacson Kaile’s site.

David Hingsburger is a long-time disability rights activist who’s begun using a wheelchair in the last few years. His essay “12 Steps? Me, I’d Rather Sit” captures the frustration of a last-minute change from an inaccessible venue to one that worked for him:

…These things are difficult because while I appreciate everyone’s understanding, I didn’t want it. While I was thankful for the extra effort made to find a room immediately, I didn’t want it. What I wanted was simple. Accessibility.

Accessibility doesn’t just mean I get easily into a building. Accessibility means anonymity. It reduces the need for compassion, understanding, special consideration, to Nil. It allows me to slip in unnoticed and set up quietly. This doesn’t mean it masks my disability, it just makes it mean something very different.…

Verify & report

Do an on-site survey with someone who’s truly familiar with the needs of wheelchair and scooter users. (Not all wheelchair users automatically have this knowledge, just as not all walking people know everything about sidewalk construction. Some non-wheelchair users also have these skills.)

Check for level paths to every area. A single, unramped step is as significant a blockade as two flights of stairs. Wheelchairs need at the very least 36″ (1 m) for corridors and 60″ (1,5 m) to turn around.

Describe any non-conforming areas in your publicity and program: forewarned is forearmed, and it demonstrates that you’ve actually checked the place out. Don’t use the term “wheelchair-friendly,” which has no defined meaning. Do reference any standards the venue meets: “ADA compliant” in WisCon’s case.

Make sure that stages are ramped as well. (Our venue can only ramp one stage at a time. This requires members to self-ID at reg, and program coordination to place ensure the ramped stage and the wheelchair using panelists are in the same room. I know from experience it’s easy to blow this one.)

Wheelchair Parking aka Blue Zones

Providing designated wheelchair parking in all seating areas permits wheelchair users the same freedom to come and go as those using the seats. Well-meaning non-disabled people will often say, “oh, but of course I’ll move a chair out of the way if you just ask.” And from their viewpoint, that’s a one-to-one personal issue. But from perspective of us wheelchair users, it’s a one-to-many problem, since we must ask for seating rearrangement every where we go.

While leaving empty spaces seems like a solution, chairs inevitably migrate further apart, filling them in. The inexpensive and highly effective alternative are “blue zones,” 36 in (1 m) squares outlined with 1in (2,54 mm) blue painters’ tape. It’s bright, stays down on carpet and comes up easily.

If you know how many wheelchair users are in attendance, be sure you make that many blue zones at the big get-togethers. (Otherwise, 1 for every 100 is a rough guideline.) Always have at least one blue zone, especially in the smallest program rooms (where crowding is most an issue). When you have room for two, put one up front and one in the back. The former is great for the wheelchair user who may also have hearing or vision impairment; the latter works well for those of us who get claustrophobic and need to be able to leave right away.

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