Monday, January 11, 2016

Oops, The Mighty did it again...and again...and again.

Remember when I said I was waiting to see what The Mighty would do in the wake of our conversation?

Well, I found out.  And it wasn't pretty.

I told Vicki and Megan during the call that I was planning on posting my demands and guidelines on my blog.  They made no attempt to convince me to refrain from that.  They were well informed and should not have been taken by surprise.

So I posted them.  And later that night, I got up the courage to post a link to that post in the Mighty Voices Facebook group.  I said something along the lines of "I'm probably going to get jumped on by the parents for demanding they write about their kids with respect, so when this hits my breaking point, I'm out of here.  Megan and Vicki know where to find me, as do the people in this group who have been willing to listen and learn." I also emphasized that Megan and Vicki were lovely, and that it was many parents in the Mighty Voices group who were nasty and rude to me and other self-advocates.

Imagine my shock when less than ten minutes later, my post was removed and I was removed from the group, as were many others, mostly self-advocates.  The supposed rationale for this culling of the group was as follows, posted by Vicki in the Mighty Voices group AFTER removing people and emailed to all Mighty contributors:

Hi everyone,

When we first started Mighty Voices, we designed it to be a place for our frequent contributors to connect and collaborate. We will be making changes to Mighty Voices in the next few weeks as our new community manager comes on board. The first of these changes is that we want to return Mighty Voices to what it was designed to be. For this reason, we are removing anyone who hasn't submitted a story for consideration on The Mighty in the last four months.

Please know this doesn't make you any less a part of The Mighty. We are so glad you're a part of our community, and we hope you continue to contribute to our site. If you have any questions or concerns, just let me know.

Best regards,
Vicki Santillano
Senior Editor | The Mighty

Let's say I give The Mighty the benefit of the doubt and take their explanation at face value.  What exactly does kicking contributors out of the Facebook group who haven't contributed in four months accomplish?  It in no way goes to the root of the problems, not even close.  All it does is make the Facebook group easier to manage for them.  And as a former Facebook group moderator, I can tell you that when your group is growing, you don't kick people out.  You hire more moderators.  Hmmm....who suggested that?  Oh right, I did.

Contributors were given no warning before being removed.  None.  Zero.  The explanation came after the fact.  There was no chance for anyone to redeem themselves by submitting a post in a timely fashion if they wanted to stay in the group.  We were punished for crimes we didn't even know we committed.

But what angers me the most is the swift removal of my honest post with no explanation whatsoever.  Vicki and Megan have done no moderation whatsoever over the past two to three weeks in the cesspool that is the Mighty Voices Facebook group.  Now, all of a sudden, it was as if they realized that they should be doing something.  But instead of moderating hateful and offensive comments (see below for some samples), they removed a post that I warned them I was going to write, which wasn't even offensive towards them (the worst I called them was lackadasical and naive, if you recall, and I pointed out some perfectly understandable reasons that they might be that way).  I don't know whether the blog post itself upset them, whether it was my direct commentary on Facebook accompanying the post, or something else entirely, because once again, I got no explanation, no apology, nothing.

Meanwhile, posts like this are still up, some in Mighty Voices and some on the main Mighty Facebook page (screenshots posted and described below):

This was in response to the post by a mother, written under her real name, with a photo of her son, and going into detail about her son's bathroom problems:

A partial screenshot of a Facebook thread.  Names and profile pictures are blacked out for privacy, with different colors representing the different commentators.  The first comment says "Wow tmi I'm glad my parents never posted my bathroom problems to fb".  It has ten "likes",  All other comments are replies to the original.  First one under the original says "It's more than that.  Its a story of hope." It has three "likes".  Second one says "I'm sorry that all you see in this story is "bathroom problems".  Perhaps you need to broaden your perspective a bit to get the real meaning in this story." It has 12 "likes".  Next one says "Although it is a great story of a stranger helping someone else, it's embarrassing for her child if and when he does find out mom put the story all over the internet.  Kids with Down Syndrome, even in adulthood, have feelings.  And if someone pointed out, "Hey, that's the boy from that bathroom story on The Mighty, I'm sure he would be mortified.  Even the lowest functioning can get hurt feelings from this.  Next comment says "Very true, that's gonna be humiliating for the kid." It has two "likes".  Next comment says "There is a bigger picture here people." It has two "likes".  Next comment says "Get a grip people! This little boy had Down's Syndrome and Autism and was non verbal!  His mother would be more than thrilled if her son COULD read this and be embarrassed!  Forget any embarrassment and look at her horrible predicament...being a mother..." The comment is cut off with a "see more" link and has five "likes".  Final comment is from the same person who said that it was gonna be humiliating, and says "So what you're saying is that this kid has no right to privacy because of how severe his disabilities are?  That's messed up.  Every single person has a right to confidentiality no matter what their ability." It has four "likes".


So, in essence, in this thread, we have people saying "People with disabilities have feelings." and other people very nearly literally going "No, they don't."

This next screenshot was part of a comment thread on an unknown post.

Screenshot of a Facebook comment, with name and profile blacked out for privacy.  Comment reads "Disabilities are meant to teach others! To serve, to help, to be humble, to be patient.  There is nothing wrong with that.  Let disabilities inspire." The reply by Kelly Ford (who gave me her permission to show her name and picture) says "Disability is meant to teach and inspire?  Could you perhaps be more clear about this point?  My son, myself, and others do not feel our "purpose" in life is to inspire and teach solely on the basis of a disability.  Most certainly not as a minor child who will grow up and have a digital caricature of ourselves painted permanently online for the "inspiration" of others.  Especially in a narrative we did not choose ourselves.  Perhaps I have misunderstood....I apologize in advance if I missed something here.  Just looking for clarification."

Apparently, I exist solely to inspire people.  Silly me, I thought I existed to live my life.  This is a complaint I hear frequently from people with visible disabilities in particular and something I encounter often.  When I am getting my coffee or going to class or catching a train...I am not there to educate you.  I am not there to inspire you.  I am there to get my coffee or go to class or catch a train, just like everyone else.  No one else has this expectation placed on them that they must be available to satisfy people's every whim every second of every day.  Yet, because we are disabled, it is not only expected of us, it is demanded of it.  It becomes our obligation, our job, and we are continually expected to do it for free (which is, of course, one of the problems with The Mighty and other sites, though frankly a small problem in comparison with the rampant ableism and inspiration porn that is becoming clearer on The Mighty by the day).

These types of posts (and these examples are truly the tip of the iceberg) promote stereotypes and use disabled people as props for the satisfaction of the able.  Demeaning, offensive, and frankly dangerous posts are still up....and yet my honest critique of my phone call with the Mighty editors was removed almost as soon as it was put up.  It's hard not to suspect ulterior motives here.

I have to ask Megan and Vicki, what the hell did you think I was going to do?  You knew I was going to put my demands and guidelines up on my blog.  Did you think I wasn't going to talk about the call itself?  Did you think I wasn't going to post it in Mighty Voices?  Did you think I was posting it on my blog just for my own amusement?  I'm highly confused here.

Obviously, I wasted my time and my breath trying to educate people, including The Mighty editors. I put in my own time, and did a lot of work both putting together my demands and guidelines, and talking on the phone with The Mighty editors (which, incidentally, is a fairly inaccessible medium for me, because phone calls give me severe anxiety).  I did all this for free, when I could have spent that time on far more productive things that could actually make me money.  I did all this because I thought there was a chance The Mighty would listen.   I am beyond disappointed.  I am hurt, enraged, and disgusted.  The Mighty did not even have the decency to be honest about their extreme indifference and even antagonism towards disabled people.  I would have respected them much more if they had.  They pretended to care, and then stabbed us in the back with a flimsy excuse and no apology.

It's clear that The Mighty does not care.  They disrespected me, and they disrespected a lot of other people, both self-advocates and non-disabled parents.  I will be asking The Mighty to remove my pieces and my profile from their site.  You do not try to silence me, and yet keep my pieces up on your site for the clicks.

Goodbye, The Mighty.  I'm sorry that actual disabled people had the nerve to critique a disability-related site.

Thursday, January 7, 2016

Debriefing my phone call with The Mighty, and where we go from here

I just got off the phone with Megan and Vicki, editors of The Mighty.  We had set up this phone call over two weeks ago and I admit, I was skeptical that it was actually going to happen, particularly in light of the news that The Mighty hired a disabled parent of disabled children to manage their Mighty Voices portal (where authors can submit their pieces).  It seemed to me like they were putting the cart before the horse, and trying to fix things before they talked to everyone and fully understood where the problems were.  So I was pleasantly surprised when I actually received the phone call, right on time, from Megan and Vicki, and just that simple act made me respect The Mighty team much more.

(For background info on The Mighty controversy, check out the #CrippingtheMighty Storify and this excellent Washington Post article, in which yours truly is quoted!)

Megan and Vicki seemed eager to hear my opinions, particularly in reference to potentially sticky situations (authors using language to self-identify, the use of trigger warnings, etc.)  I think they were surprised when I told them that I had already drafted a list of demands for The Mighty as well as a list of potential editorial guidelines.  I emailed them my lists and they took the time to read through them while on the phone and to ask me to clarify relevant points.

All in all, throughout this process, I've found Megan and Vicki to be mostly well-intentioned and eager to learn, if a bit naive and somewhat lackadasical, especially when it comes to moderating the cesspool that is the Mighty Voices Facebook group (a private Facebook group for contributors).  However, they may simply be overwhelmed.  As someone who moderated a Facebook group for over three years, I certainly know the difficulties of moderating, especially when arguments happen and turn nasty.  The sheer drain of it was a large part of the reason I stopped moderating and even left the group altogether for a few months.

In any case, Megan and Vicki have certainly been better than most of the nondisabled parent contributors to The Mighty, many of whom have formed their own blog where they can presumably be free of actual disabled people, who might get in the way of the credo that a child's disability is ALL. ABOUT. THE PARENTS.

However, a phone call means nothing if it's not followed up with action.  Where we go from here is dependent solely on what The Mighty does.  I know I'll be watching.  I also told Megan and Vicki, point blank, that unless I'm comfortable with the changes, I will not be submitting any more pieces to The Mighty.  I doubt that the changes will be so radical as to make me feel comfortable submitting to them again, but I'm not ruling out the possibility of being pleasantly surprised.

Below are the list of demands I wrote for The Mighty, as well as the editorial guidelines I drafted.  Megan and Vicki know that these are being posted in the interest of transparency and accountability.  Feel free to chime in in the comments with any demands or guidelines you think should be included.

List of Demands for The Mighty

  1. Publicly make available all financial records on The Mighty website.
  2.  Pay contributors for their work (suggested rate of $50 per republished article and $75 per original article).  Compensate writers an extra $25 if their piece is picked up by another website.
  3. Establish editorial guidelines for pieces submitted and encourage contributors to edit their pieces if they do not meet those guidelines.  (Sample editorial guidelines below)
  4. At least half of the Mighty staff should be people with disabilities, and at least half of those should be people with disabilities who are not parents (25% people with disabilities who are not parents).
  5. Specifically hire at least one person (preferably disabled, can be a disabled parent of disabled children) to review submissions as they come in and offer editorial feedback.
  6.  Establish guidelines for what is shared on TM’s social media pages similar to the editorial guidelines (see I Am Norm’s social media guidelines).
  7. Make the Mighty Voices Facebook group a safe space by clearly outlining a list of rules (can be similar to editorial guidelines – no violating children’s privacy (unless it’s specifically stated that the child has given their permission), no harmful language, trigger warnings and image descriptions.  Establish a clear list of consequences for breaking the rules (such as a three strike policy).  Specifically hire one disabled (non-parent) person and one nondisabled person to co-moderate Mighty Voices group, with potential for more moderators hired as needed.  Moderators can refer difficulties to the editors if things escalate to a point where they no longer feel comfortable handling it.
  8. Establish a peer review process for parents writing specifically about their disabled children (can be used at the discretion of the person who is reviewing submissions – obviously a parent’s experience is going to overlap with their children’s to some extent, but if they are solely writing about their children, rather than parenting, peer review is needed).  For these types of pieces, as well as anything that could be controversial, one disabled (non-parent) person and one nondisabled parent will review the submission and offer feedback.  If one or both of the reviewers decide that the piece should not be published, the piece must either be edited to bring it more in line with TM’s guidelines, or rejected completely.  Peer reviewers will be compensated $25 for their review.
  9. Reach out to disabled-run and disability activism groups such as the Autistic Self Advocacy Network, National Council on Disability, etc. to partner with.

Editorial Guidelines
  • Use either people-first language (people with disabilities) or identity first language (disabled people) if no preference is stated.  For specific communities who have a history of preferring one or the other, default to that if no preference is stated.  (For instance, the Deaf community and the Autistic community both generally prefer identity first language.  However, those with intellectual disabilities tend to prefer people first language.  This is not a hard and fast rule, but it is known that a majority of people in those communities prefer that language.) If the person you are writing about (if you’re writing about another person) or yourself (if you’re writing about your own disabilities) has a preference, use that preference.  Never use terms like “special needs”, “retarded”, “wheelchair bound”, “confined to a wheelchair”, or “differently abled”.  Those terms are disrespectful and do not encourage disability acceptance and pride.
  • Rule of thumb: if you wouldn’t share it about someone else, don’t share it about a disabled person.  This includes embarrassing details such as bathroom needs, or sharing about someone in a difficult moment without their permission (such as videoing a meltdown and posting it).  If it’s something potentially embarrassing or could be used against someone later on (like in a job search), and you have that person’s permission to post, indicate that at the beginning of the post.
  • Avoid inspiration porn.  This is a story (or an image, or a video, etc.) that objectifies a disabled person in order to make a nondisabled person feel good.  Examples of this are applauding a nondisabled person for doing something nice for a disabled person, without the disabled person’s consent or input, platitudes like “the only disability is a bad attitude”, and similar sentiments.  Make the disabled person an active participant in your story.
  • Include image descriptions and trigger warnings, if needed.  Image descriptions are a short description of what a picture looks like so that those who are blind or visually impaired can access that content.  Trigger warnings are warnings at the beginning of the piece that content may be triggering for people who are victims of trauma or who have specific phobias.  Trigger warnings are not about “political correctness”.  They’re about giving people a chance to choose whether or not to read content that may actually cause them harm.  If image descriptions and/or trigger warnings are not included in your piece, the editors may add them.
  • Make sure your piece has a purpose.  Complaining is fine, but specific complaints and ranting are usually more suited for private groups than a public website.  What is the purpose of your piece?  To shed light on a specific diagnosis?  To show how someone accomplished something specific?  Keep your purpose in mind as you write and make sure that that purpose shines through.
  • Disability is difficult, but it’s not just difficult because of symptoms.  If your piece discusses how difficult it is to be disabled or to be a parent of a disabled person, keep in mind that environmental barriers can be much more disabling than biological symptoms, and include those barriers in your piece.  This is the essence of the social model of disability, which says that disability results from the interaction of a biological impairment (the diagnosis of cerebral palsy, autism, etc.) with environmental barriers.
  • Make sure you’re not using humor at someone else’s expense.  Humor is great, but not when you’re using it to put someone else down or make someone else feel like you’re making fun of them.  Make sure your humor is fun for all.
These guidelines were developed in conjunction with Carly Findlay of Tune Into Radio Carly, and Nora Ruth of A Heart Made Fullmetal.  These guidelines and demands are not to be used without crediting Cara Liebowitz and linking back to That Crazy Crippled Chick.

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.

Love,
Cara

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.