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!