During the last night of the Ms. Wheelchair America pageant,
after being named Ms. Congeniality and the first runner up, I was running
around the ballroom with a bunch of kids who were there. Two of the little
girls I was playing with were wheelchair users – they both had spina bifida
just like me, let’s call them Lyla and Grace. Then there was a younger boy and
girl whose mom was also in the pageant – we’ll call them Max and Belle. Lastly
there was a nine year old girl whose mom used to be Ms. Wheelchair America back
in the 80’s – we’ll call her Ella.
We were all racing up and down the ramps, screaming,
throwing confetti, and having an overall good time. The littlest girl, Belle,
who walks, wanted to ride on my lap, so I scooped her up and we raced the other
kids together in my chair. The other girls in wheelchairs, Lyla and Grace, were
comparing their sweet wheelchair moves with mine. We were all having a
fantastic time when Ella looked at me and the other girls in chairs and said “Wheelchairs
are so cool! I wish I needed a wheelchair. I ask my mom for one all the time.”
I immediately high fived this little girl and told her “Yeah!
Wheelchairs are cool! I like the way you think.”
Then I went to teach Lyla a new wheelchair trick and when
she hesitated I said “Don’t be afraid to try! What’s the worst that’s going to
happen? You’re going to fall out of your wheelchair and break your neck so that
you need a wheelchair?” This made Lyla giggle and she tried her new wheelchair
trick.
At the same time, Ella proclaimed, “I want to break my neck
so I need a wheelchair!” I high fived
her again and said “Being in a wheelchair is awesome! I’m so glad you think so
too!”
In that moment I was so proud of myself as a disabled woman
and of that little girl who had no pity for people with disabilities, but rather,
the utmost admiration. Her mom is a wheelchair user, two of her playmates that
night were wheelchair users, she was surrounded by 26 strong, competent women
competing for Ms. Wheelchair America all week – why shouldn’t she want to be
like us?
However, when I told people how proud I was of this, I was
met with rude glances and hostility. I was told by many people that I was wrong
for being proud that this girl wants to be like me.
Why is it so wrong to be proud that a little girl wants to
be like me?
Why is it so wrong that a little girl wants to be like me?
Why is it so wrong to desire disability?
As I sit here contemplating why it’s such a terrible thought
that Ella wants to be a wheelchair user just like me, I can’t help but think of
Lyla and Grace, the two little girls with spina bifida.
I was them once. I know what they’re going through as little
girls in wheelchairs. They are told every day by their family members that they’re
praying that they will be able to walk someday. They are approached by complete
strangers in public who will say that they will pray for Lyla and Grace too. They are asked constantly “What’s wrong with
you?” They are learning that their bodies are wrong. They are learning that
being able to walk is the ultimate goal and because they cannot walk something
is wrong with them.
If these
little girls said that they wanted to walk just like their moms, no one would
bat an eye. No one would be all up in arms that these girls should love
themselves the way they are and not try to walk. No. In fact, people would
support them. They would pray for them. If videos of these girls struggling to walk
with braces and crutches were posted online with the tagline of “She WILL walk
someday” it would be shared over 300,000 times. The comments would all say
things like “We are praying for you here in Nebraska!” and “Keep believing and
you will walk again!” and “God does great things!”
But if you
just posted a video of these girls playing happily and effortlessly in their chairs,
it’d be shared 20 times max. No one would write “God does great things” on this
video. In fact, this video with happy girls in wheelchairs would probably have
comments like “It’s such a pity such cute girls are in chairs” and probably
some unsolicited prayers too. Yes, a video of happy girls playing would get a
comment like “I will pray that they will walk someday.”
So why is this okay?
We’re happy to support normalcy and drop words like “cure”
and “heal” when we see happy little girls with disabilities, but if someone wants a disability that is wrong?
And it’s not just with wheelchairs. Apparently it is wrong
to desire anything outside of being a “healthy,” nondisabled person.
A child can wish to be tall when he grows up, but he can’t
wish to be a Little Person - that would be blasphemy. A little girl can wish to be skinny and the
world would support her, but God forbid if she wishes to be fat.
If we support a person who wants to be opposite of the norm then we’re wrong, we’re morbid, we’re
senseless, and a slew of other things.
So I ask again, why?
Why can’t disability be desirable?
Why can people pray for little girls in wheelchairs to walk
again but I can’t high five a little girl who wants to be in a wheelchair?
Here are the two main reasons I
was given:
1. Everyone should love their bodies and be
proud of who they are
Agreed! It would be awesome if
everyone loved their bodies and were proud of who they are. I am 100% in
support of this idea, but it’s kind of bullshit.
If an obese girl says she wants to
lose weight, society doesn’t flip a shit and tell her to just love herself the
way she is. No, society creates TV shows so that we can sit on our couches,
eating popcorn, as we watch her struggle to become some idealized size that our
society has deemed beautiful.
If a girl dyes her hair her entire
life because she doesn’t like being blonde and much prefers being a brunette,
no one is outraged. Instead, we have aisles full of different shades of dye in
every store and we have hair salons – take your pick ladies. And while you’re
at it, get a perm or Japanese straightening, because that’s okay too. No one
will argue you don’t love yourself.
And who says I can’t love myself
and be proud of myself and still wish to be different? I am drowning in self-love
over here, but every day I wish I didn’t have tiny spina bifida feet. I want
standard feet so that I can wear cute heels while sitting in my chair, but
instead I have these tiny feet with braces that only fit in Adidas. As much as
I love my Adidas, I must admit, I really want to wear a cute pair of Jimmy Choo’s
with my cocktail dresses. When I tell people all about my desire to wear cute
heels, no one ever gives me a speech about loving myself. Why can’t Ella love herself
and her body and still want to use a wheelchair?
And what about transgender people?
They are born in bodies that they do not identify with. When they choose to
transform their bodies to conform with their gender identities, does that mean
they do not love themselves? Does that mean that they are not proud of who they
are? Or does it mean that they love themselves so much that they’ll go through
the pain, the financial burdens, and the dirty looks in society in order to
truly be themselves?
Why is it different for Ella? Why
can’t able bodied people feel that their bodies are not the bodies they were
meant to have? Why can’t they want disabled bodies?
Of course, lastly, I bring you
back to physically disabled people who desire to be able bodied. Nobody (but me
and a few others) is up in arms when they want to change their bodies in order
to be able to walk to fit into society’s ideal norm.
2. God gave Ella the ability to walk and she
should use it
Fine, then God gave Lyla and Grace
wheelchairs and they should use them. Society should stop donating millions to
create exoskeletons or cures to paralysis because God made these girls unable
to walk and they should stay that way.
God also gave Laverne Cox a penis,
so she should use it. In fact, all trans people should just use the body parts
they came with, no matter how unhappy or suicidal it makes them.
If God made you a certain way then clearly you have no choice in the matter. You don’t get to have a say in who
you are.
Obviously I’m not going to push little Ella in front of a
bus so she can use a chair. Hell, I’m not even going to encourage her to jump
in front of a bus herself. But I will encourage her desire to be a wheelchair user.
She doesn’t pity people with disabilities; she admires us. She admires us so
much that she wants to be like us and that makes me proud. Why wouldn’t it?
It makes me proud to see some kids in our world recognize
that disability is not a detriment. We’re not pitiful creatures. No, we’re
awesome. We’re so awesome that little girls want to be like us.
We can cry tears of joy for kids in chairs who walk a
wobbly step, we can pray for them to walk, and we can high five them when they fervently
proclaim that they will walk someday.
But when an able bodied kid fervently proclaims that she
wants to be a chair user I am supposed to tell her no? I am supposed to discourage
her? I’m supposed to tell to her that she shouldn’t want to be like me? I’m supposed
to make disability sound like a bad thing that she shouldn’t desire? I can’t
cry tears of joy that this child wants to join my norm? I can’t be delighted that she sees the good in disability
and that she wants to add to the diversity of this great world by becoming
disabled? I can’t pray that someday she might know the joy of being a proud
disabled woman?
Why?
Because society tells us that disability is bad and if you’re
disabled then there is something wrong with you. But there isn’t.
There is nothing wrong with you.
There is nothing wrong with me.
There is nothing wrong with having a disability.
There is nothing wrong or negative or bad about being
disabled.
I would not be who I am today if I didn’t have my
disability.
I don’t say that to be cutesy. I absolutely mean it. My
disability has made my life far better than it would have been if I didn’t have
a disability. No one in my family went to college besides me. In fact, the
trend for my high school class was to go to the local community college, if
anything, and then get a mediocre job. Instead, I received a full scholarship
to a four year college because of my grades and my status as a minority because
of my disability. While in college I studied abroad in Ireland and had an
incredible time. People would stop and ask me how I could study abroad in a
wheelchair and I would respond that wheelchairs are made to allow people to get
out, not to stay inside. This made me wonder what people with disabilities in
the U.S. were doing if it was so surprising to people that I could travel alone
to Ireland, so I went back to the U.S. and started volunteering at an independent
living center to learn more about the Disability Community. Soon after that I
was hired as a part time Disability Rights Advocate while still in college.
This led me to work for Senator Harkin, the senator who sponsored the Americans
with Disabilities Act. After working for Harkin and the independent living
center I saw that there were plenty of disability rights laws, but not enough
people enforcing them, so I went to law school. Now I am a Disability Rights
Attorney who gets to travel, advocate, and defend the rights of the amazing people
in the Disability Community.
My disability has made my life amazing.
If I didn’t have my disability I would likely be working in
a call center or as a server in a restaurant right now like many of my high
school classmates. I don’t say that to disparage my classmates, but I do say
that to point out how much further I have been able to go and how much more I
have been able to achieve because of my disability.
Yes, there are struggles in my life, but my disability isn’t
to blame for those struggles. Furthermore, none of my struggles have ever been
so terrible that I would ever consider giving up my disability to avoid the hard
times. It is not my disability’s fault that restaurants have stairs. It is not
my wheelchair’s fault that some doorways are too small for me to fit through. I
am not the problem. The problem is our society that has created oppression
through inaccessibility and blatant discrimination.
When I come to a set of stairs in the front of a restaurant,
I simply decide not to give that restaurant my money and I go elsewhere. When I
find a doorway is too small, I go another route. I don’t sit at home crying
over stairs and skinny doorways. Dear lord, I have so many better things to do.
I go out dancing. Yes, dancing, in my wheelchair (and my
moves are better than most of the able-bodied people who are two-stepping on
the dance floor). I work. I educate about accessibility so that Lyla, Grace,
Ella, Belle, and Max will live in a more accessible world when they grow up –
because accessibility isn’t just for people with disabilities. I skydive. I jam
out to embarrassing music in my car. Heck, I even win a Ms. Congeniality award
occasionally.
My life is awesome and fulfilling and my disability has
never stood in the way of my happiness. My disability is not some conniving
bitch trying to bring me down, it is not a barrier, it is not a burden – it is a
part of me. Probably the best part of me. My disability does not hold me back,
it pushes me forward.
So why can’t kids want to be disabled like me?
