Friday, July 7, 2017

This Is What Happens When You "See the Person, Not the Wheelchair"

Any wheelchair user will be able to tell you stories of well meaning able people (or, I suppose, non wheelchair using disabled people) who say "I don't see the wheelchair, I just see the person.", usually while patting themselves on the back for being such good friends to the crippled person.  This is bolstered by overly cheery campaigns that urge you to "see the person, not the disability", or "see the ability, not the disability!"

While it's always vaguely heartening to know that some people are interested in getting to know a person beyond their durable medical equipment, this type of thinking leads to a dangerous myth, the myth that wheelchairs are somehow optional accessories, that they're not really part of a person, and that going without them is a simple matter of will and plucky perseverance.  While these thoughts may not be explicitly verbalized, we can see the effects of them all too well in our current political landscape.

The Senate is trying to pass a bill that, among other things, would decimate Medicaid by cutting billions of dollars from the program over the next several years.  States who cannot cover the remainder on their own or through a set amount of money granted to them from the federal government will have to choose between dropping people from coverage or reducing the services it covers.  Currently, ONLY Medicaid covers home and community based services (personal care attendants) that allow many disabled people to get out of bed, get dressed, go to the bathroom, and generally live their lives.  Medicaid also pays for wheelchairs and other mobility equipment.  I've been active with ADAPT in the last few months, protesting against this bill that will literally kill disabled people when they lose services that allow them to live and be free in the community.

Tonight, ADAPT protesters in Ohio were flipped out of their wheelchairs and dragged out of the building, with their wheelchairs on the other side of doors locked by police.  Something similar happened last month in DC as we occupied Senator McConnell's office and the hallway outside.  (I say "we" because I was there.).  They were still people, sure, but they couldn't go anywhere without their wheelchairs.

When you "don't see the wheelchair", when you ignore the vital role that wheelchairs play in the lives of people who need them, you are contributing to a culture that literally rips our wheelchairs out from under us, that slashes funding to the programs that allow us to have wheelchairs in the first place and then wonders why we didn't try harder to get a job.  Without my wheelchair, I wouldn't be able to work, at least not without exhausting myself and seriously endangering my productivity.  My wheelchair has given me the confidence and the ability to live on my own, four hours away from my parents, and work a full time job.  And last time I tried, private insurance wouldn't cover a wheelchair for me.  Medicaid may be my only hope in the future, as my disabilities change and I need a wheelchair that provides more support than my scooter does now.

This is what the rhetoric of "don't see the wheelchair" does.  It treats wheelchairs as an inconvenience to be moved out of the way in favor of the person.  Words are just words, but when words lead to actions like this, words are dangerous.

So take a good, hard look.  See the wheelchair.  More than that, see the person, wheelchair and all.  Our lives may depend on it.

A picture of me with Senator Tom Harkin last winter in front of the Capitol building.  I'm sitting in my scooter.

Monday, May 1, 2017

Stop Lying To Me About Accessibility

Guess who's back, back again, Cara's back, tell a friend!  I skipped BADD last year due to overwhelming stress from internships, but I'm back!  Welcome to my Blogging Against Disablism Day post for 2017.  Hold on to your hats, friends.  It's a doozy.

Last weekend, my friend Danielle and I celebrated her 25th birthday.  Her mother had offered to pay for a hotel room in Manhattan for the two of us for Friday and Saturday nights, with a larger dinner and karaoke celebration with some of our other friends on Saturday evening.

My first reaction, after accepting Danielle's invitation, was "You made sure the hotel is accessible, right?" Danielle and I are both mobility impaired, and I use a motorized scooter.  She replied: "Yup, my mom and I both asked.  Feel free to ask a third time." Trusting Danielle, I didn't ask the hotel myself.

We got to the Roosevelt Hotel late on Friday night, around midnight.  We discovered that the main entrance was not accessible and we had to go around the corner to the accessible entrance.  The "accessible" entrance was a revolving door flanked by two regular pull doors.  To our dismay, the pull doors were locked.  Faced with no other option, I attempted to go through the revolving door and got my scooter wedged in the doors.  I was only able to free myself with the help of Danielle and some Good Samaritans who recognized the predicament I was in.

"Did we get an accessible room?" I asked Danielle on the way up to our room.  "Well, they didn't have exactly accessible rooms, so I just told them to put a shower chair in the tub." She said.  That's fine with me, as I just need room to park my scooter and then I get up, but a wheelchair user who can't walk like I do would have been in trouble.

The next morning, wanting to shower, we found no trace of the shower chair we'd asked for in our tub.  Not only that, the bathroom did not have grab bars, making it nearly impossible and definitely dangerous for me to shower standing up (or even sitting down).  We called the front desk (twice) and had to wait for them to bring up the shower chair they had promised us.

The shower chair was a transfer bench type of shower chair that went over the ledge of the bathtub.  However, the legs were too short to reach the floor, forcing us to adjust the chair ourselves as best we could.  Even then, the chair was dangerously wobbly, especially for Danielle, who showers facing the spray, as opposed to my method of showering facing away from the spray.  Luckily, both of us made it through our showers unscathed.

By the time we dealt with the shower chair and other predicaments that aren't relevant to this post, it was almost time to head to the restaurant, Cara Mia, for dinner.  That's when things got really interesting.  Danielle had called ahead to make sure they were accessible, yet when we arrived we were confronted with....a step.

Puzzled, I asked someone (half yelling from my perch on the sidewalk at the foot of the step) if they had an accessible entrance.  "We do." they answered vaguely.  "But it's downstairs and people are sitting there." They said "We can carry you up the step." I hemmed and hawed.   "That's fine for me." I told them (if it was more than one step I would have never allowed it).  "But there's two other wheelchair users coming and their chairs are much heavier than mine, you can't lift them."

(On a side note, I'm always amazed at people who exclaim "We can carry your chair up the steps!" when faced with a 200+ pound powerchair plus its occupant.  Do they think they'll suddenly turn into the Incredible Hulk when they try to lift the chair?)

Meanwhile, Danielle was on the phone to another one of our friends, explaining the situation.  "If we can't get in, we'll go somewhere else." She said.  I think that's when the restaurant staff realized they were in imminent danger of losing a 10 person reservation.  All of a sudden, a server discovered a portable ramp somewhere and I made it into the restaurant without incident.

Now, let me pause and backtrack to a year ago, when almost this exact situation had played out.  We had made reservations at a restaurant called Mozzarella e Vino.  We had called ahead and they had assured us they were accessible.  Yet when we got there, there was a flight of steps down into the restaurant.  They told us that they usually carry wheelchair users down the steps, and that my scooter didn't count as a wheelchair because it was electric.  In that case, we left and went to the restaurant next door, who were more than happy to accommodate us.

So back to Cara Mia.  I texted my other friend who was coming to let her know to ask the staff for the portable ramp when she got there.  Apparently, when she asked, the staff gave her a dirty look and only relented when her mother threatened to film the whole incident.  And I learned later that when another friend arrived and said he was with Danielle's reservation, the staff flat out lied and said "They're not here, they must have left already." (We were ten people, three of us wheelchair users.  There was no way they could have missed us or mixed us up with another party.)

The restaurant was cramped and waiters kept having to squeeze past my scooter.  They very clearly did not want us there.  They rushed us through our meal, forgot some of our food, and a man who I can only assume was the manager kept hanging around our table anxiously.  We finished up and paid the (over $200) bill.

And then...nothing happened.  I mean that literally.  Nothing happened as we sat at our table, ready to go, for over half an hour.  We could not leave.  In order to make room to put the portable ramp down, the staff had to move some tables, and did not want to make the people sitting there get up for even a few seconds so we could get out.  They didn't tell us this, of course, until we asked for the ramp.  So we had to sit and wait for strangers to finish their meal so we could leave the restaurant.  By the time we finally got out, I was on the verge of a panic attack.  We were paying customers who racked up a very nice bill, and we were treated like dog poop on the bottom of someone's shoe, just because we had disabled people in our group.

(Luckily, the accessible doors were unlocked when we got back to the hotel that night.)

This was not my first rodeo with restaurant inaccessibility.  Longtime readers will remember the Jekyll and Hyde incident a few years ago.  But at least we didn't go into that situation having been promised accessibility.  All of the incidents above took place in supposedly "accessible" venues.  We were lied to multiple times in multiple venues.

Maybe this makes me a bad activist, but I don't even care anymore if you're not accessible.  I'm burned out.  It's been 27 years since the ADA and I've been alive and crippled for almost 25 of them. You don't want to make your business accessible?  Whatever.  I'll take my money elsewhere, and you'll lose the business of the 20,940,600 Americans that are mobility impaired.  Just don't fucking lie to me when I ask if your business is accessible.  Be honest, please.

Let me make something very, very clear.  If you have accessible doors that you lock after a certain time, it's not accessibility.  If it's "only one step", it's not accessibility.  If your solution is to carry wheelchair users down the steps, it's not accessibility.  If wheelchair users are literally trapped in your restaurant until other diners finish their meal, it's not accessibility.  If your accessibility is conditional, it's not accessibility.

I am begging you, if you can't be bothered to make your business accessible, just don't lie to me.  If you're honest about your inaccessibility, I will thank you politely for the information and go somewhere else.  But if you lie to me, you better believe you'll end up on my blog.

Friday, March 24, 2017

CP Awareness Month 2017: Myths and Facts About Cerebral Palsy

It's Cerebral Palsy Awareness Month! In case you're new here, I have CP!  See, now you're aware!

While I have mixed feelings about the concept of awareness (see my latest blog post for Rooted in Rights), I thought it might be useful to compile some myths and facts about CP.  Let me know in the comments if there's any I missed!

Myth:  All people with CP use wheelchairs.

Fact:  Not true at all!  Some people with CP can't walk at all, some use mobility aids only for exercise, some walk part time in the community, and others walk with or without mobility aids 100% of the time.  All ways of moving around with CP are valid!  Personally, I walk without aids inside my home and office, and use two canes, a walker, or a motorized scooter outdoors or in crowded situations.

Myth: People with CP are "retarded".

Fact:  Though some people with CP have an intellectual disability (formerly called mental retardation), many do not.  The statistics I've seen have varied wildly, so I'm not going to cite any statistics, but many people with CP are classified as having "normal" to "above normal" intelligence.  Of course, IQ tests are.....less than useful for people with CP who have fine motor impairment and/or communication issues, so that may be why the stats are so varied.  (I also believe intelligence is a multifaceted concept that cannot be defined by a test, but that's a topic for another time.)

Myth: People with CP have slurred speech.

Fact: Just like everything, this varies wildly from person to person.  Some people can't talk and use a communication device.  Some people find it very difficult to talk and are hard to understand.  Some people only have a little bit of a speech impairment that may get worse when they're tired or stressed (like me).  And others have no speech impairment at all.  Many people with CP (like myself) have trouble controlling the volume of their voice, because of issues controlling the muscles in their lips, tongue, and throat.  I'm not shouting on purpose!  I'm just loud and I can't help it.

Myth:  CP can "get better".

Fact:  CP is a lifelong disability caused by brain damage.  While therapies and treatments can improve function and improve quality of life, that's not the same as the CP "getting better".  Nor is it "better" to walk than to use a wheelchair.  Many children with CP are forced into painful and traumatizing treatments, therapies and surgeries at a young age in the hopes of making them "better".  This is not okay.  Treatment should only be focused on improving quality of life.  As an adult, I can now choose what I do to manage my CP and give myself the best quality of life I can have with the resources I have.

Myth: On the flip side, CP gets worse as you age.

Fact: Weeeeeeeeell.....*makes wishy washy motion with spastic hand* Yes and no.  The actual brain damage does not get worse over time.  CP is not a degenerative disability like muscular dystrophy.  However, aging and changes in lifestyle can lead to an increase in pain and discomfort, and a loss of function.

Myth: All people with CP know each other.

Fact: Do you know all non-disabled people in the world?  Yeah, I thought not.  This does have a ring of truth to it in that in a small area, a lot of people with CP will end up going to the same doctors, therapists, programs, etc.  But just because they have CP does not mean we automatically know each other!

Myth: People with CP die young.

Fact:  While there are some aspects to CP that can potentially lead to an early death (trouble swallowing, leading to aspiration pneumonia, the potential for infected bedsores for people who can't move very much, the high incidence of epilepsy and hydrocephalus in people with CP), CP in itself does not cause early death.  I know tons of people with CP, including several in their 60s and 70s!

Myth: CP is genetic.

Fact: CP is not genetic. It's caused by brain damage before, during, or shortly after birth.  There are some risk factors, like premature birth, that may be genetic, leading to more than one person with CP in a family (especially with twins), but CP itself is not genetic.

Myth: CP is contagious.

Fact:  Do I really need to dignify this one with an answer?  CP is brain damage.  It is not contagious.

Myth: People with CP can't be sexual.

Fact:  I can tell you that sex is one of the most talked about topics in the Facebook group for people with CP I'm in.  People with CP can run the gamut of sexuality, including asexuality.  That's not a CP thing.  That's a human thing.  Just like the rest of the population, some people with CP are more sexual than others.

Myth: People with CP can't be parents.

Fact: Not true!  There are plenty of CPers (or Ceeps, as we like to call them in my corners of the Internet) who are parents.  Check out this hilarious documentary "We Won't Drop the Baby" to see the experience of two parents with CP.

Myth: People with CP sit at home all day collecting a check from the government.

Fact: Some people with CP can work enough to not rely on government benefits like SSI or SSDI.  Some people can't.  Either way, people with CP do a lot more than just sitting on the couch collecting a check!  We go out, we socialize, we travel, we attend concerts, anything that anyone else does!

Myth:  Having CP means your mother used drugs or drank alcohol while she was pregnant.

Fact: While it's true that drugs and alcohol use in pregnancy can cause fetal brain damage, for the most part that's a separate condition (Fetal Alcohol Syndrome and Fetal Drug Syndrome).  CP is more often caused by a lack of oxygen to the brain during birth, or a stroke in infancy.

Myth: If your child is born with CP, you can file a malpractice suit against the doctor who delivered your child and get a lot of money.

Fact: Despite what all those law firm commercials would have you believe, not every case of CP is due to doctor negligence. The vast majority of cases of CP aren't anyone's fault - they just happen.

Myth: CP is a childhood disability.

Fact: While it's true that CP occurs in childhood, not everyone with CP is a kid.  We grow up!  And once we turn 21, we lose access to a lot of the services that are important for people with CP to be independent and in charge of our own lives.  It's a problem, one that needs to be addressed repeatedly.

Myth:  A person with CP can't understand you when you talk, so you should talk to their parent or caregiver.

Fact: Absolutely false!  Even if someone has an intellectual disability or uses a communication device, they can still understand what you're saying.  Talk directly to them, please.

I could go on and on.  Did I miss any myths that you wanted to see addressed?  Let me know!  I hope that you learned something today and that you'll know to counter those myths with cold, hard, facts the next time you encounter them!

Thursday, September 29, 2016

"Speechless" Review: S1E2 - "N-E-New A-I-Aide

On this episode of Speechless, JJ gets a new aide, Maya has an argument with herself, Dylan and Jimmy prank the neighbors, and Ray becomes a PT's bitch.  Let's watch Speechless!

I started to agree with some people this episode that said Maya was too over the top.  I didn't feel it so much last episode, maybe because it was the pilot.  But if the show continues like this, Maya could get real annoying, real fast.  The argument with herself, trying to get the principal to be more hard-ass, was bordering on bizarre.  I get that Maya is kind of looking for a fight, because she wants to be a warrior mom for her son.  But you never look a gift horse in the mouth!  If the principal is willing to give your child the accommodations he needs, you hightail it out of there before she changes her mind!  You'd think Maya would have learned that by now.

(A thought I just had - why is the principal dealing with the accommodations and not the special ed department? Does this school not have a special ed department?)

At the same time, I know mothers like this.  I do!  Mothers who will call their disabled children whenever they go anywhere without their parents, freaking out and going "Where are you?  What are you doing?  Do you need to go to the bathroom?" Or even worse, call their aide and speak directly to them.  In this situation, Kenneth should have been acting only as JJ's translator (or re-voicer, as some people with communication disabilities call it) so that HE could talk to his mom.

I also thought the beginning of the episode, with the life-alert buttons, was weird.  Maya gave them a whole speech about having a special needs child who may need medical attention, but we've been given absolutely no indication that JJ is medically fragile.  It would have made more sense to say "My son has epilepsy and may have a seizure that requires medical attention." (Not all seizures need medical attention.) Epilepsy IS a very common co-morbid disorder with CP!  My fear is that without further context, it might give off the impression that all people with CP are medically fragile.  Some are, and there's nothing wrong with that.  But it's usually more co-morbid disorders than CP itself, and I don't want this show to give people any wrong impressions about CP.

All of this is not to say I didn't love this episode!  I did!  I loved that JJ skipped his PT appointment, even though it wasn't the right thing to do.  And Kenneth let him, because ultimately it's JJ's decision.  That's a phenomenon called dignity of risk in special ed/disability circles, and it's super, super important.  I was really happy to see the show portray JJ as a regular teenager who might want to break the rules sometimes!  Too often, kids with disabilities are portrayed as saintly angels who never do anything wrong, or devils who cause trouble for everyone around them.  I loved that this show has never fallen into that trap (so far, please let it continue!).

And my god, did that lead to the funniest scene of all time.  First of all, "We pay for physical therapy.  We get physical therapy." is a line I could absolutely see my mom saying.  We didn't have much money when I was a kid, so I got all my PT and OT in school, unlike a lot of other kids with disabilities I knew.  But if we paid for PT outside of school?  You better believe my mom would be trying to make the most out of every penny.

So, in order to make the most out of every penny, Maya makes Ray go to PT instead, where the PT promptly criticizes his pronated feet and basically tells him to walk heel-toe.  It's clear that the Speechless team consulted with either an actual PT or someone who's had extensive experience with PTs in childhood for this scene (I can't help but wonder if Micah Fowler himself contributed a few notes about having extensive PT in childhood).  This, in turn, makes Ray so self-conscious that, trying to make himself walk "normally", he weirds out his crush at school.  As someone who was constantly trying to show a barrage of doctors and therapists how "well" (i.e. "normally") I could walk as a kid, this scene resonated with me like no other.

Now, let's talk about what is, in my opinion, the most important scene in the entire episode.  During her meeting with the principal, Maya realizes with some horror that Kenneth has taken JJ to the bathroom.  She flees to the men's room, where Kenneth and JJ are just finishing up.  Now, why is this such an important scene?  Let us count the ways...

1) It's a big step in Maya's growth.

I think this is the moment, more than anything, where Maya realizes that she can let go.  She stands in the doorway and she sees and hears that Kenneth has things under control, that JJ isn't going to get hurt if she's not with him every second.  It's hard for her to let go, but she's starting to finally realize that she has to if JJ is ever going to grow up and be his own man.

2)  It's a realistic situation.

What I love about Speechless, above all else, is that it doesn't shy away from showing the nitty gritty reality of disability.  A lot of kids with CP need help with toileting!  It's a thing!  Instead of trying to steer around the "uncomfortable" topic, Speechless handles it with humor and grace.  When was the last time you saw a character who needs help toileting using the bathroom on a TV series?  Never?  That's what I thought.  It may not seem like much, but to me, this one scene is a HUGE step in representation of disabled people on TV.   It's not handled as some uncomfortable, awkward, horrible thing.  It's just someone using the bathroom.  Kenneth is casual about it and neither he nor JJ seem embarrassed about it.  They're just doing what they have to do.  It reminded me of countless bathroom trips with the counselors at camp, complete with casual conversation and a few laughs.

I'd like to address the subplot with Dylan and Jimmy pranking the neighbors, but honestly, it bored me.  I didn't like it, I didn't understand it, and I didn't think it was necessary.  I know it was supposed to be funny, but it felt annoying and forced, especially the repeated use of variations on "we're idiots".  We get it, you're an eccentric family.  You don't have to pound it into us., especially not with an ableist term like idiot.  I liked the subplot with Dylan and the track team in the first episode, so hopefully this was just a writing fluke and Dylan will get better plots in the future.

Stay tuned next week for my next review of Speechless!

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Thursday, August 11, 2016

Why are we so angry at Trump for mocking a disabled reporter?

Hear me out, here, before you start hating on me for the title.

In case you've been living under a rock, let me catch you up.  Last November, presidential candidate (who is now the official nominee for the Republican Party) Donald Trump publicly mocked New York Times reporter Serge Kovaleski, who has arthrogryposis.  Trump waved his arms around in a supposed imitation of "someone groveling to take back a statement made long ago", however, his actions looked suspiciously like an imitation of the way Kovaleski's arms are positioned due to his disability.

The story "grew legs", so to speak, and was quickly plastered all over the media.  And even though we are faced with a new outrageous Trump story almost daily at this point, this is the story that just won't die.  In a recent poll, more than half of prospective voters were "bothered a lot" (the highest metric of displeasure in the poll) that Trump mocked a disabled reporter.  The incident has been the subject of two PSAs produced by a Clinton super PAC.  Several notable figures, including former President Bill Clinton and Senator Tom Harkin, referenced the incident at the Democratic National Convention.

This isn't the first, nor the last time that Trump has threatened, mocked, and humiliated members of the press.  NBC reporter Katy Tur wrote an extensive piece detailing her experiences on the campaign trail and Donald Trump's numerous attempts to insult her and smear her reputation.  Donald Trump has insulted numerous other minority groups, calling Mexican immigrants "rapists", Filipinos "animals", and of course, calling for a complete shutdown of Muslim immigration to the United States.  So why is the mocking of a disabled reporter, a relatively tame incident for Donald Trump, the number one issue that makes voters unhappy with him?

It's because disabled people are generally seen as the untouchables.  We are weak, childlike, unable to defend ourselves.  Ironically, Donald Trump said it himself: "Who would do that to the handicapped?" While he is more than willing to defend - and repeat - his remarks about other minority groups, when it comes to disability, he backtracks.  Disability - even in a political campaign as charged as this one - is somewhat taboo.  And the nation has risen to the defense of a community that has proven, quite plainly, that we can speak for ourselves.

So let's let Serge Kovaleski go and focus on the real issues.  Disabled people don't need defenders.  We need access to the durable medical equipment we need to survive.  We need healthcare that won't shun us for having pre-existing conditions.  And above all, we need civil rights.  Everything else is just lip service.

Sunday, March 6, 2016

Disability Is The Overlooked Issue of Flint, Michigan and the Entire Presidential Race

During tonight's Democratic debate, the issue of lead in the water in Flint, Michigan took center stage.  Both candidates rightfully called for the resignation of Governor Rick Snyder and outlined their plans for repairing the water system and assisting the people of Flint, particularly children, who have been affected by lead poisoning.

Disability, curiously enough, was not mentioned.  Neither was race, for that matter.  That was strange, because when you get down to it, Flint is a perfect storm of racism and classism coming together in an insidious storm to create and perpetuate ableism, racism, and classism.  Over half of Flint's population is black, and almost half of the population lives below the poverty line.

And then this happened.  Senator Bernie Sanders spoke about meeting a mother whose young daughter was affected by the poisoned water.  "Imagine this for a second, imagine a mother who had a bright seven-year-old gregarious girl doing well in school. Two years later, that child is now in special education, intellectual capabilities significantly deteriorated. That is a crime against that child, and the people of Flint."

Once again, disability was solely used as a prop to illustrate a larger point.  Disability is not the crime against the people of Flint.  Intellectual disability, whether born or acquired, is not a crime.  The crime is that people, mostly marginalized people, are being systematically poisoned, and their government, which is supposed to represent them, is sitting on their hands and humming a merry tune.

The entire purpose of that story was to impress upon the people the very real consequences that the contaminated water has had for the people of Flint.  And that's important to talk about.  But disabled people are not a tragedy.  We are not your moral lesson, not the bogeyman under your bed.  And a statement like that, by a presidential candidate, only contributes to the stigma and fear of disability, in Flint and beyond.  The actual word was not said.  It didn't need to be.  And if it takes a sob story about a disabled person for you to grasp that there is injustice happening, you need to examine your morals a little more closely.  Instead of, once again, objectifying disabled people to make non-disabled people feel something, let's ask this:

Dear presidential candidates, what are you going to do for the newly disabled children of Flint, Michigan?

Will you dismantle systems (like IQ testing and other standardized tests) that put disabled children of color at a distinct disadvantage because of inherent bias?  The case of Larry Lucille P. v. Riles P. was over thirty years ago, proving that IQ tests are instruments of eugenics that rest on the ableist and racist assumption that children of color are naturally less intelligent than white children.  And yet we still use IQ tests as a method of classifying children with intellectual and learning disabilities.

Will you make sure they get a free, appropriate public education as mandated by the Individuals with Disabilities Education Act?  Will you make sure that their parents or guardians have the resources to understand the special education and IEP process and hire independent counsel to represent them and their children if due process is necessary?

Will you end the school to prison pipeline, which disproportionately affects disabled people of color?  Will you make sure that the young black children growing up disabled in Flint will not live in fear of being killed by the police for the sole "crime" of being black and disabled?  Freddie Grey was disabled by lead poisoning as a child.  We all know how his story ended, a larger example of systemic, environmental racism and ableism coming together to paint a white, able man's hands with blood.  What will you do to make sure that the children of Flint don't become the next Freddie Gray, and the next one, and the one after that?

Will you make sure they can go to college?  When they have grown up, will you make sure they are gainfully employed (and not stuck in sheltered workshops that pay pennies as an hourly wage)?  If they receieve benefits, will you ensure that they will not lose their healthcare and personal assistance services if they join the working world?  Will you work to end the entwined systems of racism, classism, and ableism that will continue to put Flint's children at a disadvantage?

Disabled people are the largest minority in America.  We are a swing group.  Yet while the presidential candidates are campaigning furiously for the vote of black and Hispanic people, no one is actively campaigning for the disabled vote.  And that's a problem.

The Respectability Report has done an amazing job of distributing surveys to each presidential candidate on the issues that matter to disabled people.  Of the candidates still in the race, both Democratic candidates have responded.  In fact, Senator Sanders was the first to respond and the only one to respond in full by the deadline set by the Respectability organization.  Of the four Republicans still running, only John Kasich has responded to the survey.

The Respectability Report is a great start and I salute all those who are working tirelessly to shine a light on the candidates' positions on disability issues.  But it is not enough.  Disability needs to be an issue all the time, not just when talking to "special" people.

To the presidential candidates, take notice.  Disabled people are tired of being your bogeyman or your punchline.  We are waiting to finally become your constituency.  Just say the word.  We'll be listening.

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.