Monday, May 9, 2016

Let's Talk About Accommodation-Policing

"That person doesn't need that scooter!  I saw them walking into the store!"

You've heard this before, I guarantee it.  Right?  You're at work, or you're out and about, and someone (usually able-bodied, usually well-meaning) makes a comment like this.  It's for the good of disabled people everywhere, they reason, their super hero cape hidden away under their hoodie.  Sometimes, they even have a disabled family member.

This topic came up a week or two ago, when an acquaintance asked my advice on what she should tell a friend who previously used her mother's accessible parking pass to park closer to school and thought it was no big deal.  Now, though, she has become passionate about no one ever using an accessible parking spot unless she is sure they are appropriately disabled.

Well, I don't have the magic answer.  But I do have a story to share.

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[Image is: Me, freshman year in high school, dressed in a red sweatshirt and dark green winter coat.[



It was just a few months into 1996.  (Prince's Party Like It's 1999 remained so futuristic that we partied like it was...you guessed it...1995.  ...That meant dancing with your camp counselor in tie-dyed shirts and having shaving cream fights.  Totally PG.)

It was a Friday.  This particular night, I went with my family to see a movie and then to a restaurant for dinner.  This was apparently a popular idea, because the place was packed.  The entire parking lot was full - my dad had to drive around a bit until an accessible spot opened up - so we could park our giant van.

Once we parked, Dad went inside to inquire about the wait.

Half an hour.

And even the area that invited people to wait to be seated was full.  As two of the four of us kids had a difficult time standing for a long period of time and as Mom was more than seven months pregnant with our youngest brother, Dad made the call that the entire family would wait in the van.  He would run in and check availability every so often.

Dad had barely returned to the van to wait with us, the radio on, when an unfamiliar woman approached his side of the vehicle and asked if he had an accessible parking sticker.  It was prominently displayed on the dashboard of the van.  So, Dad was a bit irked, but indicated the sticker anyway.

My siblings and I were unusually quiet, wanting to know what our parents would do next.  What this woman would do next.

She spoke first.

"Can I see it?"  (Her mother was disabled, and apparently she needed to see that our parking sticker was legitimate.)

Now, my parents had had enough.  Dad said no, she couldn't see it.  Mom was shocked and angry.  She asked, "Do you want to see my daughter's crutches?"

Things reached a critical point when my parents got out of the van (perhaps to get the argument away from the kids) and continued going back and forth with the woman.  She was screaming.  They were shouting back, defending me.  Defending us.  There was swearing.  The woman even made it personal with Mom.

By the time Mom and Dad got back in the van, my sister and I were both crying.  My sister was embarrassed.  I was feeling like I should not have come along on the family outing, because this would have never happened if my parents could have just parked in a regular spot.

We left, and ended up going to a pizza place that was a family favorite, where I tried to collect myself and look like I hadn't just been crying.

As a teenager, I blamed myself.  It never occurred to me that I was not the problem in this situation.  That this woman could have been in the wrong, verbally attacking my family and making us feel so terrible we left and ate somewhere else.

It wasn't my fault.

I just wanted to spend time with my family, and we just wanted to be able to wait together in a way that did not leave half of us exhausted.

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Now those of you who know me might say, "But you use a wheelchair!  You look disabled!  She had no right to do that to you and your family!"

Well, guess what?  When I was sitting in that van with my family 20 years ago, I didn't look disabled.  My crutches were on the floor of our van, where they always were, out of sight of this lady in the parking lot.  I didn't look disabled then.

And for a few seconds when I get in and out of a vehicle, before you see my adaptive equipment, I might look able-bodied.  But the fact is, I'm not.

I know people abusing their family member's accommodations is an issue, unfortunately.  I know that some use the accessible stall because it fits more people, or allows you to really stretch your legs.  But when people talk about able-bodied people passionately defending the disabled people who "really" need the accommodations in question, I remember being a teenager that night.

I remember feeling degraded.

So, I urge you, before you make a public stink or leave a nasty note about someone using a scooter in a store, or parking in an accessible spot, consider a few things:

THERE IS NO SINGULAR WAY TO LOOK DISABLED:

One-fifth of the population is disabled.  That does not mean that all twenty percent of the population are wheelchair users.  And not all those wheelchair users are paralyzed.    Not everyone who is disabled looks like they need accommodations.  Some walk unaided a short distance, but need help for longer distances.  Some can't carry things and walk at the same time.  Just because it appears that we are able-bodied, doesn't mean we might not deal with chronic pain, breathing, lung or heart issues that make exertion like walking difficult.

And while it does happen that accommodations are abused, there is also the chance that in your zeal, you are ostracizing someone who does need those accommodations.

Realistically, that person using their family member's parking sticker isn't going to stop doing it until they realize it's wrong.

DISABILITY IS COMPLEX:

I read a statistic recently that 85% of people who use wheelchairs are able to stand up.  I'm not sure how accurate this is, but I do know that I am one of those people.

Sometimes when I'm shopping, I have to stand, and clutch at shelving in order to reach an item.  This doesn't mean I need my wheelchair any less.  These days, though, I'm extra aware of how I am perceived in these moments.

Will someone get angry at me for faking a disability even though I'm totally not faking?  (I swear, I'm just short, and in my chair I am shorter...)

My mobility is impacted by things that people on the outside may think are completely random: the weather, my emotional state, or whether I will be around crowds.  Those of you with CP, though, understand that cold weather makes us tense up, and so does being upset or nervous - and nothing makes me more nervous than being in a crowd.  Being tense makes it harder to move freely.  I'm more apt to choose my wheelchair in most instances because of these things.

So while standing for a moment is possible, my wheelchair is also completely necessary.

CHANNEL YOUR PASSION TO HELP US INTO AREAS WHERE WE REALLY COULD USE YOUR SUPPORT:

To do this, listen to the disabled person or people in your life.  What matters to us?  What do we need?  What are we fighting for?  Then ask how you can best support us in reaching that.

There are as many different varieties of disabled people out there as there are nondisabled.  We all have different dreams.  Different hopes.  Different desires.  I don't speak for every disabled person (it's why my blog is called Tonia Says.)  So ask the disabled people in your life what they need your help with.

But be prepared to accept that we may not need your help.

We may be okay just as we are.


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