Wednesday, December 23, 2015

An Open Letter to The Mighty

Dear Editors, Authors, and Supporters of The Mighty,

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.

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.

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.

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 - self deprecating.

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.

Food restrictions are presented as funny (similar to Meltdown Bingo).  Parents are described as "living with autism", as if autism is some unwelcome houseguest.  "Pity parties" are encouraged 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.

Some posts are downright mortifying.  This one 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 "Born This Way", 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 anyone respect), this Mighty post exploits a teen with Down Syndrome's embarrassing situation for clicks and shares.

(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 - especially a teenager - publicly is not the way to find support.)

The Mighty also repeatedly shares the type of "not-news-news" inspiration porn that presents disabled people as somehow amazing for doing ordinary tasks (like getting a job), 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 this one, critiquing inspiration porn.

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.

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 only those posts that offer respect to disabled people and presume competence.  Because no matter how important our parents are in our lives, the disability experience is, first and foremost, about disabled people.

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 think that it may not be a respectful portrayal, don't publish it.

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.

It's time to decide where your loyalties lie.  I'll be waiting.

Wednesday, December 2, 2015

Why This Latest "Heartwarming" Story Isn't So Heartwarming

Behold!  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?

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:

"Picked out a cake at Meijer. 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!"

*deep breath* Okay, there's a lot to unpack there!

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.

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.

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.  

That's the first thing wrong with this story.  You don't laugh at someone doing their job.  That's just mean.

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.

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!

"You probably made her day." 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.

"She's not supposed to decorate cakes." 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.

The moral of the story is that kindness is important!  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.

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.

This is a prime example of inspiration porn - using and objectifying a disabled person to advance your own purposes and ideas.  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.

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.

(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.

Love from a fellow motor skill impaired ordinary person!)

Saturday, October 3, 2015

The Curious Case of Anna Stubblefield and DMan Johnson: Introduction and Intelligence

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.

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.

In a gross miscarriage of justice, Anna was convicted and is being held without bail until sentencing on November 9th.

The trial was centered on three main factors:  intelligence, communication, and consent.  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 should have been "Did Dman have a way of communicating consent, and if so, did he consent to sexual activity with Anna?"  Unfortunately, because of the actions of the judge and the prosecution, the crux of the trial became "Did Dman have the mental capacity to consent?" The answer they reached was "No."

So bearing all that in mind, let's start off this series with a discussion of intelligence.

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).

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 "both clinical assessment and individualized, standardized intelligence testing." 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.

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.

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 “[o]n the average, black children score fifteen points, or one standard deviation, below white children on standardized intelligence tests.” 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 (particularly Hispanics) 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.

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 features, the SB5 has "colorful artwork, toys, and manipulatives".  That's right, manipulatives.  Which must be, as the name implies, physically manipulated.  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 anything.  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 anything 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.

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!

(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 15% of children with CP have a visual impairment, 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.)

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.

If you're not suspicious of the prosecution yet, you should be.

In the next post, we'll talk about the second area of focus:  communication.  This is a big one with a lot to unpack, so stay tuned.

Saturday, September 5, 2015

Dear Special Education Majors: You Don't, Actually, Know Everything

Dear Special Education Majors,

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 understand when a kid is having a behavior in a public place or when you ask me if I use my mobility aids all the time 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.)

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.

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 am.  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 like 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.

Dear special ed majors, please don't tell me you respect disabled people. Show me.  Most of you have a long way to go.


Tuesday, June 16, 2015

On Being "Ugly Disabled"

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 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.)

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…").  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. 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.)

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).  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. 

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. 

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. 

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. 

Friday, May 1, 2015

My Most Visible Disability Has the Least Impact on Me (No, Really)

Blogging Against Disablism Day 2015 post!  This is year....eight or nine for me, I think.

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.

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 just 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 more than CP does.  One of the reasons I love elmindreda's essay 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.

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 not CP.  Most days, my CP is just sort of there.  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.

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.

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.

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 incredibly 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.

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.

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.

Blogging Against Disablism Day, May 1st 2015
[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"]

Sunday, April 19, 2015

ADA Generation Girl: Reflections on the 25th Anniversary of the ADA

On 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.

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.

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 expect 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.

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 does exist.

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 ADA25NYC 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 add it to the MOPD calendar.  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 hosting a linkup of blog posts 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 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.

Tuesday, February 24, 2015

Inspiration Porn isn't Progress: A Response to Josephine Fairley

Imagine, 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.

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".

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.

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. 

This is an adaptation on Jane Elliot's famous "Brown Eyes, Blue Eyes" 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 inspiration porn, a phenomenon that British newspaper writer Josephine Fairley seems to think is "progress".  

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."*

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 experienced recently), 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.

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.

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."

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.

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.

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.

(But I still think blue-eyed people are so inspiring.  *wink*)

*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.  My wheelchair frees me.  Perhaps you are "walking bound"?

Tuesday, January 20, 2015

Walking Is Overrated: Learn to Love the Wheelchair

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.  Mobility aids are life changing.  I know, because they changed my life for the better.

From the age of three, when I took my first steps without a walker, to the age of twelve, I walked completely independently.  I spent all my elementary school years, as well as two years of high school in a large school spanning six grades, walking independently.  I always had poor balance and tired easily.  I fell often.  The only mobility aid I used was an uncomfortable fold up transport wheelchair that my parents had to push.  I tried to avoid using it whenever possible.

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.  She used one and found that it really helped her.  I gave it a shot, and I never went back.  At first, I only used it for long distances.  After two difficult years, I decided to use it in school.  I was terrified what people would think.  I didn’t want questions or pity.  I just wanted to get on with ninth grade and not get squished like a pancake.  I was pleasantly surprised.  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.  I used my crutch in school until I graduated high school.

Soon after I started using a crutch, I began thinking seriously about college.  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.  It slowly dawned on me that there was no way I’d be able to walk around a college campus.  In order to go to college, I would have to get some sort of wheelchair that I could propel myself.  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.  I needed something portable, because my parents both drove sedans and weren’t willing or able to buy a lift-equipped van.  My physical therapist recommended a mobility scooter, and so, after extensive research, my new 3 wheel scooter from Pride Mobility arrived in my backyard the summer after eleventh grade.

My scooter and I, circa 2009.
[Image description:  Me sitting on my scooter outside.  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.]

I spent that summer and the following year learning how to drive my scooter, mainly by crashing into things and tipping over.  By the time I started my freshman year of college, I already had an idea of how the scooter was enhancing my life.  Over the next three years, my scooter and I became somewhat of a symbiotic being.  I knew it and its quirks intimately.  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.  My roommate even gave my scooter a name: “Bob Scootyscootowitz”. 

Without my scooter, I would have never been able to handle college.  It acted somewhat like a second, more functional pair of legs.  I was able to zip from one end of campus to the other and back again several times in one day.  I was able to carry food on my lap and wander around the bookstore or the library during my free time.  On the weekends, my friends and I would walk and roll up Main Street and waste several hours in CVS and Dollar Tree.  Without my scooter, I would have been limited to my dorm and the immediate surrounding area.  My scooter allowed me to be a “normal” college student living on campus.  I feel confident in saying that my scooter played a large part in my graduation, summa cum laude.  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.
Now that I’m back home and I have a new power wheelchair, my scooter doesn’t get much use anymore.  But my mobility aids continue to enhance my life.  I now walk independently inside the house and use a cane, a walker, or my power wheelchair or scooter outside the house.  Because of my mobility aids, I have gained confidence that I would have never thought possible just a few years ago.  I travel all over the country giving presentations at conferences.  And because I have a travel scooter, I can still go into any car.  My scooter disassembles into five pieces that can be fairly easily lifted into a regular car trunk.  My mobility aids allow me to have the stamina necessary to travel and enjoy myself.  In short, going “backward” so to speak, in terms of my mobility, has actually been extraordinarily beneficial for me.

Me with my walker, singing my heart out, summer 2014.
[Image description: Me sitting on my walker on a wooden stage singing into a microphone.  I’m wearing a green Disabled and Proud shirt.]

Parents, I beg you, don’t be afraid of the wheelchair.  My wheelchair was the best thing that ever happened to me.  If you even have the slightest thought that a wheelchair might enhance your child’s independence, get them a wheelchair.  They’ll thank you for it later, I promise.

Soon, I plan on writing a follow up post debunking popular myths that parents have about using mobility aids.  Let me know if there are any specific myths you want me to address!

Fist pumping at the Society for Disability Studies conference dance, June 2014!
[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.]