End The Word

I stayed away from taking a stand on the r-word for many years on purpose, basically because I don’t feel like “the r-word” applies to me and I don’t have a strong opinion on it (at least not in comparison to others). I’m also not a big fan of banning words. There are words in the English language that I won’t ever say out loud under most circumstances, but I don’t think banning a word and pretending it never existed is a great idea. (But if someone ever wanted to get the ball rolling on banning the word “panties” from existence I’d be game)

I know there are people out there who think my thinking that the r-word doesn’t apply to me as some kind of defense and I’m sure on some level it is.

For the record I have had the r-word pointed in my direction. There have been times I’ve told people that I have CP and their next question is, “So are you retarded?”

Let me just say, no I’m not, for the record.

One of the biggest misconceptions of CP is that everyone with CP, which is a physical disability, also had a mental disability. This is not the case for everyone. I, myself have LD & ADD, but both are relatively mild and neither make me retarded.

I realized that I was saying something by not saying anything directly. I’ve been implying that the r-word is OK with me, and truth be told, it’s really not.

I can sum up my thoughts on the r-word in one sentence.

Ready?

Keep in mind that these are my personal feelings, and my personal feelings only.

Pick another word already.

If you’re going to try and insult me, please be a little more creative. I’ve been on the receiving end of insults for the better part of three decades and they’ve varied only slightly. I don’t even consider them to be actual insults just hollow sounds, think the teacher in Charlie Brown cartoons.

If you want to hurt my feelings evolve with the rest of the world and leave the r-word behind. Finding some other way to insult me will get your mission accomplished. Calling me the r-word will only make you like a fool, at least to me.

In “The Last Lecture” Randy Pausch suggests going for a cliché because they’re clichés for a reason, most people have never heard of them.

As much as I liked listening to “The Last Lecture” and find it valuable I have to disagree on this one point. If you want to get under someone’s skin there’s a 99.99% chance that they’ve heard every cliché, and then some. Stay away from being average if you really want to get someone’s attention.

If you’re still using the r-word to offend someone it’s about time you update your vocabulary to something much more cleaver. You aren’t going to get the reaction you’re looking for (at least out of me). I’m more likely to walk past you and call you a dope under my breath.

If you’re using the r-word “because you don’t know any better.” It’s the 21st century, you know better. You choose not to educate yourself.  So, you also fall into the “still using the r-word” category. That’s your problem not mine; who looks stupid now?

*A similar version of this post first appeared on an old blog on March 5, 2018

Advertisements

If It’s Broke, Fix It

Of all the things that people get wrong about CP the one that bothers me the most is that it’s a kids condition. When CP kids grow up they become CP adults. There is no magic pill. We don’t fall into a pit, so people can forget about us.

We just grow up, one of the many things we have in common with our non-special counterparts.

The thing is medicine has not exactly grown with us. Things are moving along. Change should be coming, but I wish it was here now. I wonder what it would look like. I know what I’d want it to look like, so I’d like to think some of my thoughts will make it to the future of medical care.

For the most part I still see specialists with “pediatric” in their specialty. Some are for convenience. Others, because no one else will see me, or I can tell they don’t know what they’re doing. Who wants to see someone who doesn’t know what they’re doing? So my medical needs are met by what I can find & who is willing to help.

Luckily, I have a pretty great team around me. If things come up short, which they often do, we can make something work out. It helps that almost everyone is always up for a challenge, because there have been more than a few in the last few years.

Make no mistake there is more in common between individuals with CP and those without than one would think. But when you get down to the details it would be nice to be treated more individually, yet as a group, than we are now.

Part of the problem does lie with the patients themselves. By the age of 14 or so medical professions begin to back off & having been under their care of so long it’s only natural to want to rebel a little, or a lot. I’ve wondered that if we were better at caring for ourselves would we already have the needed changes.

Doctors are as much at fault as their patients. Most don’t know what to do. I can out on one hand the number of medical professions who even know of an adult with CP (outside of orthopedic & neurology specialties). There were times in the past when I did honestly wonder if I’d ever know of another adult with CP, never mind meet them.

Even the doctors who focus on CP adults admit the system has failed, at least the good ones do. They’re trying to do the best they can, but they can’t do it alone.

The system has its issues but it’s not too late to fix them.

*A similar version of this post first appeared on an old blog, as part of the Cerebral Palsy Connection, on March 1, 2012

Labeled

The concept of labeling can be a complicated debate especially when you have a disability. For a long time, I avoided being labeled like the plague, partly because I wanted to avoid any discussion of my disability at all costs. My thoughts on labeling have changed a bit since then (as you’ll see from the rest of this post). All labels have their place but I wonder if we’ve gone too far in both directions, yes at the same time, meaning we want to label everything and we avoid labeling so much that it’s almost ridiculous, and I wonder if it’s becoming dangerous.

_____________________________________

Do you ever find yourself being shoved into a label that just doesn’t fit?

Do you want the short answer to that question or the long one?
The short answer is…….
Y-E-S!

The long answer goes something like this……
Here’s just a list of labels that have been applied to me:
Cerebral Palsy, Palsified, CP-er (which I hate), Premature, Special Needs, Special Ed, Disabled, Handicapped, Crippled, Dyslexic, Stupid, Slow, Dumb, Learning Disabled,
Different thinker, Adapter, Creative, Problem solver, Easily distracted, Attention Deficit Disorder, Bouncer-backer, Inspiration, Survivor, Thriver, Independent, Stubborn, Pigheaded, Closed off, Loaner, Anti-Social, Social Butterfly, Fast talker, Quiet, Courageous, Deep thinker, Over emotional, Latch-key kid, Damaged goods, Teacher,
Motivation, Friend, Enemy, Nice, Hard ass, Sweet, Sassy, Tree hugger, Hippy, Weird,
Conservative, Driven, Closed minded, Free thinker, Catholic, Addict, Artistic, Heathen,
Atheist, Non denominational, Christian, Miracle, Scattered, Fighter, Free spirit, “Mom,” Flighty, Lover, Hater, Lazy, Boring, Amazing, Spastic, Spaz, Athlete, Introvert, Extravert, Warm hearted, Cold blooded, Caring, Mess, Demented, Retarded, Big mouth, Planner, Over reactor, Disorganized, Volunteer, Recruiter, Person
…….and on and on and on

These are just a few labels I’ve been given in my lifetime. Do I feel like any of them fit me? Not really. No. None of them “fit” me. I feel like I get forced into at least one of these labels at least once a day. Other people have given them to me and force me into them, but sometimes I force myself into them for lack of knowing what else to do. No matter how much I don’t like labels they do help make things easier. I find myself relying on them in new situations or when I find myself too frustrated to be able to explain things to the best of my ability.

My favorite saying for a long time was “Label jars, not people.” It’s still a favorite but I don’t rely on it for wisdom as much as I use to. It was a title I used for an old blog, now I rarely think about it.

Even though it is a statement I rarely use anymore I still believe in it.

Things need labels.
People do not.
People are so much more than any label can describe.
If you need to label someone than you’re showing off your insecurities.
If you want to label someone label yourself, just know you’re selling yourself short by doing so.

*A similar version of this post was published on November 4, 2008

BADD ’17: In Defense Of The Able-Bodied

I’ve wanted to write this post for a long time, but it’s one of those “tread lightly” things, and that’s not my best skill, so I’ve put it off, but I think today is the day.

I’ve written before on whether or not it’s possible for those with disabilities to be ableist towards others with disabilities. While it’s a divisive topic I think it’s an important one to acknowledge and discuss in certain situations.

As excited as I was to join a swim team I knew I wanted to continue when the season was over, which ended up not being in the cards for a few reasons. I also knew the season was really just a start and I needed to find the next step.

I asked people for advice, people who have been around and faced some of the same challenges, but I didn’t exactly go how I thought.

Before I even made a viable connection, people tried to talk me out of what I had in mind.

It didn’t make sense to me, if the end goal was to create a more inclusive environment what was so bad about my plan?

I showed up to my 1st masters swim practice with extreme caution. I wasn’t sure it was going to work, especially after watching the junior team practice, but I needed to give it a try. I had 1 private session with a coach a few months before and I was still reaping the benefits. If I backed out of a chance at team practices I would regret it.

It was a hard practice but everyone seemed welcoming. I’ve kept a list of goals since I started swimming again. I had been steadily chipped away at them but things stalled, until this practice. I ended up crossing off almost everything else on the list.

Then nearly everyone who encouraged me to seek out other opportunities tried to talk me out of it, even when I didn’t ask for their opinion.

It wasn’t good for me to leave people “who are like me” or “could understand someone like me,” at least according to them.

I understand their concern, at least usually, but what confused me was these comments were coming from people actively working towards more inclusive sports. So, why shouldn’t I join an able-bodied team? Especially if it’s a better fit, in almost every way.

I know there are those out there who feel that I’m betraying “my people” but if the ultimate goal is for people with disabilities to be seen as equals to the able-bodied community so we need to become part of the able-bodied community whenever an ideal situation presents itself.

At least that’s what I think.

I’m not going to say that the change has been seamless. It’s been full of adjustments, not so great practices, and at times downright culture shock.

But I can say without a doubt that I wouldn’t be where I am today if I hadn’t made the change.

And that’s made me think a lot more about inclusion.

When we see a chance for inclusion we should take it, we need to take it. It doesn’t always come with the betrayal of the disability community, and if we keep seeing it that way then we probably should change our approach.

Inclusion isn’t a one-sided issue, we can’t just stand around and wait for people to include us. We can’t just yell, and bitch, and moan about it either, there has to be some meaningful effort on our part, and it doesn’t have to be some grand gesture either.

Sometimes “just” showing up and seeing what could happen is enough.

Blogging Against Disablism Day, May 1st 2017

Am I So Different Now?

One of the best things about relaunching a blog (and pulling down another one) is the ability to not only look back on previous material but also edit it if it feels right. The post I’m sharing is one of the 1st I wrote and kept (there are countless others that hopefully will never be found again). I was planning on editing it so it would make more sense for here and now. After reading it fully, I decided not to. This was one of the first (and at the time few) posts I wrote about disability.
__________________

Last year I got my first wheelchair. It wasn’t my first first but it was the first one built specifically for me. I was so excited the day my rep brought it to my house I practically knocked him over at the door.

As excited as I was to have a wheelchair I could call mine I needed to learn how to use a piece of equipment that was meant for me. Not only did I need to learn how to use something that was meant for me. I needed to learn how to use it correctly, and in the manner, that it was meant to be used. All of this is more involved than you would think. My chair is smaller than any chair I’ve had before, even though I’m bigger. Aerodynamics is a great thing but it can also bite you in the butt.

To help my chair and I become more of a team I went back to P.T. for mobility training. After all, the main purpose of ordering a wheelchair for me was to increase mobility. I couldn’t very well accomplish that without knowing how to get around in a non-wheelchair accessible world in a wheelchair. I spent hours learning how to go up and down curbs (safely), how to propel myself up steep ramps, if you can think of it we probably at least discussed whether I should learn another skill set or not.

Another important thing I had to do was strength training. If you’ve seen a full picture of me, or know me in person, you can see that my upper body is more than twice as strong as my lower body so you wouldn’t think strength training would be something I’d have to be concerned with, as far as my upper body is in question. The truth is the muscles you need to get yourself up a curb are the very ones that are underdeveloped in my body. I don’t know about you, but I found it to be kind of funny.

Not only did I learn proper wheelchair mobility. I learned to hate a completely new set of gym equipment; the arm bike can bite me.

The extra P.T. sessions weren’t enough. It’s one thing to maneuver a P.T. curb. The real world provides extra challenges that P.T. can’t prepare you for (sorry to all the recent spinal cord injury people out there who might be reading this). So I had to enlist someone else to help me out, so I wouldn’t flip myself over into the street.

I’m getting to my actual point now, I promise.

I went on a “walk” with my mom down the street. We live in a quiet neighborhood, at least now it is, so worrying about running into someone I knew was going to be extremely rare. It’s mainly why I agreed to go on a walk in the first place, until that day I had just practiced around the rehab where things wouldn’t seem so out of place. Shallow, yes, but everyone has a shallow moment now and then, even if I had been waiting to have my own wheelchair for who knows how long. It’s an adjustment. I still have moments these days.

Not too long into our walk I see someone I think I know, but she ran right past us without a second glance, so I let it go. Not too much longer after that the same person comes back down the street, walking this time. I quickly decide not to say anything. My mom doesn’t either because she doesn’t remember who’s walking toward us, thank God because she has a knack for calling attention to situations when I’d rather just ignore everything going on, like most mothers.

Unfortunately, the person walking towards us realizes she knows me and by the end of our interaction I’m very angry and wishing either she or I were dead so the whole thing would never have a chance of happening again.

This person I ran into happens to be the mother of one of my best friends in grade school. My weekends were either spent at her house or her daughter, my friend, was at my dad’s house. Therefore, my mother does not know her well. They rarely crossed paths, almost never.

What shocked me about our short reconnect was that she talked to my mother rather than me. My mother. She doesn’t even know my mother’s name! Yet she talked exclusively to my mother and she doesn’t even know my mother’s name. So, that last statement isn’t exactly true.
She did talk to me. Like I was a toddler!

Just because I’m lower than your eye level doesn’t mean my IQ has gotten any lower. If you know me talk to ME, not the person I’m with because you think I’m somehow damaged and will interpret your clearly lacking social skills as acceptable.

She then goes on to tell me that her daughter, my former friend, graduated from a very prestigious school with a very high paying degree and how she’s living in New York doing paralegal work, not her field of study, because she’s “trying to find herself.” She then adds that my former friend is also living in one of the best areas of New York City in penthouse with a friend, for free, because this friend is so filthy rich her parents pay for everything. She never thought about asking me, or my mother for that matter, what I’d been up to. She never even asked the customary “How are you?” anywhere in the conversation.

This was when I finally got why my mom was, and still is, against playgroups. Or at least I finally understood her theory on playgroups and why she doesn’t like them. Who the hell wants to deal with all that bragging from people who think you’re less than they are?

Normally this wouldn’t bother me so much. I’m use to people treating me differently when I’m using a wheelchair and when I’m walking around. It’s become water off a duck to me. I just let it roll of my back. People are too ignorant to make the effort worth much. Although rolling over their foot is always an option.

What made this time different was that this was the same person that treated me like I was an adult when I was 9. Now that I’m 23, at the time of the event, she treats me like I’m 2. She knows I have a brain in my head and that I’m capable of expressing myself. She was even the one who pointed out to my father that I needed more structure and stimulation in my life because of my critical thinking skills. She also made sure my dad got me interested in activities higher than my grade level because I needed it to feel good about myself. But on this one day she forgot everything she ever told my dad, and me. She completely made me think twice about who I thought she was, and under minded my respect for her.

I still have a bug in my underwear about it, as you can probably tell.

I was so offended that I had to go home and be alone. If I had talked to anybody after this conversation I would’ve taken out my frustrations on someone who had nothing to do with why I was so mad and didn’t deserve to have to deal with my wrath because of it.

Is it society’s perception about people with disabilities that makes almost everyone act this way? What’s it going to take for people to see that people with disabilities are just as much individuals as people without disabilities?

I am not my disability.
I am not your idea of my disability.
I am a person.
See me as a person.
Treat me like a person

*A similar version of this post was written on November 2, 2008

I’m participating in WEGO Health’s Health Activist Writer’s Month Challenge. If you want to find out more about Health Activist Writer’s Month Challenge visit their blog, Facebook, Twitter. You can find more posts by searching #HAWMC.

 

Why I: Don’t Feel Obliged To Advocate

A tweet came to my attention recently that I feel I should address.

However, I must issue a warning that it hit a nerve (or more like stomped on it) for me.  It might even have ventured into “trigger warning” territory with me but you’d have to check with Mac & Katherine on that one to be absolutely sure.

Now it’s an honest question and if I wasn’t part of the CP community in the way I am now, if I were a parent instead (for example), I might have the same question.

As someone who has Cerebral Palsy and is pretty high functioning I’m probably going to get some kind of backlash for my answer, but might get some sort of support too.

In short, I do not feel an obligation to reach out to those who are more severely effected by CP.

Now if we’re talking about reaching out in terms of forming friendships with those who are more severely affected; I’ve felt like people tried to force the issue when I was younger whereas it’s virtually nonexistent now. I don’t think you should be friends with someone just because you share the same disability. For me it would be like everyone with brown eyes being friends. More goes into a friendship than one commonality.

If we’re talking about reaching out in terms of community advocacy, my answer is still no, but longer.

We are one community but we don’t act like it, more importantly (from my point of view) we aren’t treated as one community.

The way I see it we’re 3 major parts of 1 community, and each part has an element of self-involvement, which is its biggest asset but it’s also the biggest obstacle for greater unity in the CP community.

In case you’re wondering, the 3 major parts (again according to me) are:
1) Parents of kids with CP
2) Parents of adults (who can’t advocate for themselves) with CP
3) People with CP

There’s a reason why I listed them in the order that I did with CP often receive the least amount of support (based on my own experience).

I’m sure you’re heard the saying, “secure your own oxygen mask before assisting someone else.”

My whole life I’ve not been what someone or an organization was looking for:
-I couldn’t get a wheelchair as a child because I could walk.
-I couldn’t try out for any age group swim team because I was disabled.
-I couldn’t receive intensive post-operative physical therapy (ordered by my physician) because I wasn’t disabled enough.
-I can’t learn to drive from anyone other than someone appointed by the state because I’m too disabled.
-I can’t receive job searching assistance because I’m not disabled enough.
-I can’t qualify for assistance grants because I can work.
-I don’t receive the most basic medical care because I have a disability & I’m considered too old.

I was in my 20s before I realized help wasn’t going to come and find me, like it seems to do for countless other people. I had to go find it and even finding help doesn’t mean that I’m going to get help. It’s always been a running joke that I’ve never really fit into a mold or set of rules, but this was real life and not a joke.

I don’t feel obligated to reach out to those who are more severely affected by CP because there are more resources out there for them. Also I can’t advocate for everyone in the CP community because it is so diverse. I stick to what I know best, but if that ends up helping more of the CP community than great.

I need to put on my own oxygen mask before I can help anyone else.

BADD ’16: Ablesim In Social Media

Today is Blogging Against Disablism Day. Blogging Against Disablism Day

I remember one of the first things I learned about the internet was don’t click on banner ads because most of them were viruses that could destroy your computer. As a result, it takes a lot to get me to even glance at an ad anywhere on the internet.

Every couple of weeks something happens to my computer, or rather the internet.
It thinks I speak Spanish.

I don’t know where or rather how it comes to this conclusion. I took Spanish for years in school but I can only remember a handful of words, none of which can be put together to form a coherent sentence.

I know people are worried that the data miners will find out too much about them from their social media habits. I have the same concerns; however, I’d need the internet to get something remotely right before I get that concerned.

In addition to thinking I speak Spanish the internet also thinks I use catheters (among other things) and want to sue people over the fact that I’m disabled.

That last one has made me change my social media engagement practices.

I realized that not paying attention to ads I am being complacent in what people assume I feel about being disabled. Yes, it would be nice to have more money at my disposal but that would mean stating that I think it’s wrong that I have a disability.

I’m sure whatever algorithms used pick up on the fact that I write about disability, and not being human don’t go much further than that. Still nearly 100% of the ads I see portray a negative view of disability.

Last week I started to not only look at the ads in my news feeds but do something about them too.

I’ve alternated between reporting “this ad is not relevant to me” and “this ad is offensive.”

Because 99% of them are not relevant to me, but they could be relevant to someone else.

I want to label all of them offensive because they’re offensive to me, but I admit I may be slightly oversensitive given that I’ve gone to paying attention to virtually none of it to all of it in the span of a day.

The internet is a powerful tool, it provides so much good to everyone who has access to it, but it also provides a lot of bad (and/or useless) information. Anyone can say anything they want and they can get away with it.

What does this mean for the disability community?

It means that ableism can come from anywhere, obviously.

It’s a good thing really. Not that ableism is ever a good thing but it gives advocates, like myself, talking points we might not have thought of if it wasn’t for things that came across our path that we didn’t agree with.

For every 1 ableist item we see we should come up with at least 2 disability items to highlight the positives of having a disability. The disability community may not have the money but we have the numbers, and more are joining the community every day.

For example, (and this is just one of the many examples obviously) the parents of the newly diagnosed child should be able to sit down at their computer and be able to find the good things about being disabled alongside some of the harsh realities. Because being disabled isn’t all doom and gloom, sadness and pity, or worthlessness or being less than.

Would I like ableism to be a thing of the past? Absolutely, but the world is full of ignorant people so, although it may seem like a pipedream now that doesn’t mean it has to be one in the future.

I’ll keep doing my part in small ways, big ways, and every way in-between.

Now about the internet thinking I can speak Spanish thing………

Blogging Against Disablism Day, May 1st 2016

Standing Is Stupid

Being the occasional reader of What Do You Do, Dear? I came across a poem by Shel Silverstein, not surprising since Mary Evelyn is an elementary school librarian, that made me laugh and shake my head in agreement. I don’t remember if I ever heard or read it during my early school days, but even if I did I think it takes on a different meaning for me now.

It goes….

“Standing is stupid,
Crawling’s a curse,
Skipping is silly,
Walking is worse.
Hopping is hopeless,
Jumping’s a chore,
Sitting is senseless,
Leaning’s a bore.
Running’s ridiculous,
Jogging’s insane-
Guess I’ll go upstairs and
Lie down again.”
Shel Silverstein, A Light in the Attic

I don’t know why, or when it happened, but for some reason standing, and walking even more so, became “the line in the sand” for people with Cerebral Palsy but it is.

I regularly get emails asking if I can walk, or asking at what age I learned to walk, or if I think someone else (often whom I’ve never met) will ever walk.

I am not a doctor, although I’ve always thought it would be cool to play one on TV.

I need to also tell you that doctors, although smart, do not know everything; nor can they inconclusively predict the future. Plus, technology and medicine is growing so much more quickly than it did even just 5 years ago, even I have trouble accepting a conclusive prognosis of anything.

I’m not saying that if you’re told your child or yourself will never walk to accept that and move on. It takes a lot to learn to walk when you have a condition that makes nero-muscular coordination difficult, so not only does it take a lot of work it takes time and money and often it does take a village. I’m not saying it’s not worth the effort but it will come with some sacrifices with no real guarantees of the desired end result. So it’s worth weighing the pros and cons, and often more than once.

Walking isn’t always all it’s cracked up to be.

In fact, able bodied people spend time trying to figure out ways how to walk less but when you have a disability that’s all anyone seems to want to focus on.

I used to say to people, “I use a wheelchair but I can walk,” even when no one asked; even I felt like I had to tell people that I can walk.

I no longer volunteer such information because a person’s ability to walk or not does not give their life value. Because a person can walk does not mean their life is more meaningful than the life of someone who cannot, or even makes the conscious decision not to for the good of one’s own health (in my opinion).

The fact that I can walk around the grocery store doesn’t mean much if I’m in too much pain to put away the groceries when I get home.

The ability to board an airplane without an aisle chair is fantastic but it doesn’t help me when I have 20 minutes to get from one gate to another if the terminal is the size of the small city.

The capability to walk down the sidewalk isn’t worth much if every time you do it you’re at risk for falling and hurting yourself, or getting blisters on your feet so large that you shouldn’t put on shoes for a few days afterwards.

Being able to enjoy a rare lunch out with friends loses something if you know you’re going to end the day early in part to the side effects of high powered pain killers and pure exhaustion.

The idea that you can do something doesn’t always mean you should, and yes that does apply here as well.

If the use of one’s legs was really so important to someone’s daily life, then wouldn’t they become lifeless the moment their legs couldn’t do anything? You need a brain, a heart, lungs, and a host of functional organs to live. If you really think about it, your legs don’t have to be able to allow you to stand up, walk, or run, in order to live.

Wheelchair users, or anyone else who uses assistance for mobility, can and do live full and productive lives, and they’re happy while they’re doing it too. A wheelchair doesn’t automatically confine a person or make them “less than.” In fact, for many people using a wheelchair, or crutches, a cane, or a walker, opens up a world of opportunities.

So next time you’re thinking about what makes a life more or less meaningful consider the words of Shel Silverstein and then try and learn something about someone who doesn’t walk as much as you might.

You Need Legs To Run

For some reason I’ve found myself in the company of runners (at least in the last decade and a half). Occasionally someone would make a comment about my ability (or lack of) to run and I’d brush it off with an accompanying reason, like, “I’m not interested enough to invest that kind of money in a track chair, especially since they’re not covered by insurance.” It wasn’t a lie, but it wasn’t exactly the truth either.

All of the questions/comments were innocent but not all were eloquent, for example, “Blind people run marathons,”

Because blindness and Cerebral Palsy are right next to each other on the wide spectrum of disabilities…..

“You need legs to run. That’s basically my weakest body part,” was the only remotely sensible thing I could think to say (but “ARE YOU OUT OF YOUR EVER LOVING MIND” almost came out instead)

Now I know you don’t really need legs to complete a marathon. Tatyana McFadden has proven that again and again and probably will again. But running using my legs were the context of the conversation so I went with it.

It’s the less than eloquent comments that make me think, am I doing too good of a job assimilating into able-bodied society? (I’m sure there’s a more eloquent way to state that, but I’m just going with my 1st instinct here).

I’ve always thought I wanted people to see past my disability, but do I really? Does seeing past disability mean that it doesn’t exist? If it does I don’t want what I always thought I wanted.

I used to think it was a compliment when someone told me they didn’t see my disability. These days I have 2nd thoughts.

I want to be seen as me “warts” and all; although I don’t see my disability as a “wart” (for the record).

Trying to not see someone’s disability, when it’s clearly visible, seems like a noble goal but it’s far from realistic.

If I’m going to go out with a group of friends “seeing past” my physical limitations can prove disastrous, both with and without my wheelchair.

The goal, for lack of a better word, for anyone and everyone is to be seen as who they are; not ignore or give any more attention to any part of themselves over another.

So are those with disabilities doing a bad job representing themselves if people forget that they have a disability? Is the able-bodied community overcompensating by telling people with disabilities that they don’t see their disabilities?

You may not need legs to run but you need to be seen as your whole authentic self in order to be successful.

Trust & Disability

Having a disability can create a whole host of trust issues, but I’m not going to talk about any of that. I’m sure plenty of people have said plenty on the subject already.

After an already full day and then hitting the gym I tried not to look like a hot mess (although I probably stank of airplane & gym sweat) I went down to the hotel lobby for something to eat. Knowing my history of stomach issues after a travel day I wanted something small so I settled for eating at the bar rather than a larger meal at the restaurant.

Typically I hang back and people watch before making my approach, especially if I’m in my wheelchair and I have to interact above eye level (like a bar). But I didn’t see anyone ordering or eating at any of the tables so I was on my own.

I ordered my food and told the server (or bartender?) that I’d be at a nearby table when she brought out my food I asked if I should her or at the bar when I was finished. She said something to the effect of, people usually pay when their food arrives, but it was OK because she trusted me.

I didn’t think anything of it in the moment, probably because I’d been running on fumes for hours, but then I thought about it.

She trusted me. Great.

But why?

(Call me a skeptic.)

I watched everyone around me while I ate my meal.

She didn’t seem to “trust” anyone else, nor did any of the other staff.

I couldn’t help but think (and still think) she trusted me because I have a disability; that I use a wheelchair.

Because someone in a wheelchair won’t even think of stealing, never mind actually do it (and full disclosure I did consider “forgetting” to pay when no one was looking just to prove a point, but I had no interest in going to confession the next day so I didn’t).

Someone in a wheelchair wouldn’t think of stealing; just like people with disabilities can’t possibly be attractive.

I’m sure no harm was intended on her part, and many people who read this will probably think I’m being oversensitive, but the reality is she’s been taught in some fashion to believe that people with disabilities are different than those who are able-bodied. And by treating me differently than everyone else who had a bill to pay she’s furthering the misconception that those with disabilities are “different” and/or “less than.”

I have news for you; people with disabilities are capable of stealing too.

We’re capable of a lot of things, just like the able-bodied.

We’re not all trustworthy.

We’re not all nice.

Some of us have left bills unpaid (intentionally and unintentionally).

Some of us can be rude.

Some of us are attractive.

Just like everyone else, because we like to include ourselves in the “everyone else” crowd.

It’s nice when someone extends a kindness towards another person, but if you won’t extend the same kindness to someone else, then please don’t. Everyone desires to be treated equally, regardless of ability.

If you wouldn’t trust an able-bodied person to pay a bill after the fact, for example, then don’t trust a disabled person (whatever your rationale for that might be). Also it’s not the best idea to go against company policy, if there is one, just in case you end up losing your job because you felt bad for someone who doesn’t need the pity.