Saturday, June 16, 2012

The "D-Word"

Disability was a four-letter word in my house. So was Tourette Syndrome.  You didn't say them.  You didn't think them.  If we didn't talk about it; it wasn't happening.  It wasn't true.

I can't tell you how many times I heard the phrase "don't say it or you'll make it true" when growing up.  As if it were something I was causing with my thoughts.  That by thinking of my tics, I was making them worse.  That by telling somebody I had a new tic, I was going to cause it to become permanent.  True, my brain doesn't function in the way a neurotypical person's does, but my thoughts don't give rise to new tics.  Misfiring things in my brain do - well... and incorrect levels of dopamine and/or serotonin (I forget).  At least that's the newest theory.

The Americans with Disabilities Act defines a disability as:
     (a) a physical or mental impairment that substantially limits one or more of the
     major life activities of such individual;
     (b) a record of such an impairment; or
     (c) being regarded as having such an impairment.  -ADA definition-

Having a diagnosis does not a disability make.  Just because you know somebody who has Tourette Syndrome, doesn't mean that they are a person with a disability also.  The same goes for any medical diagnosis.  The medical impairment (notice, not "diagnosis") has to limit at least one "major life activity" and you have to either have a record of this impairment or people have to view you as having such an impairment.

My Tourette's impacts what are called "activities of daily living" (ADLs).  A basic ADL is something like feeding yourself, walking by yourself (without adaptive equipment, including a dog!), dressing yourself, etc.  I can do all these things; it just takes me a lot longer than a lot of people.  Some days I can't even attempt to do some of these things.  Try doing up buttons or a zipper with "claw hands" or with tremors so bad you can't hold onto anything long enough to perform the fine motor skill.  Try feeding yourself when you can't hold a utensil, or your head is swinging so much you can't get a utensil with food on it into your mouth (and when you do you are more likely to bite your tongue or cheek, or choke on the food, or drop everything and have to start over again).

I have adapted for skills like this.  I can manage to get myself dressed most mornings without much incidence.  And I have taught myself how to become slightly ambidextrous.  I cannot write with my non-dominant hand; but I can brush my teeth, feed myself, brush my hair, cook, and do a heck of a lot of other things with my left hand.  Things I could never have done before the Tourette's and that I never would have had a reason to learn how to do before.  People who go out to eat with me are witness to the careful choreography that occurs when I try to eat; I start with my right hand (and I will typically use a knife to cut whatever I need right out of the gate before my hands start acting up) and as soon as that hand spasms I grab the utensil with my left hand and wrench it out before I can drop or throw the fork.  I then continue eating with my left hand until that hand spasms, at which point I take the utensil with my right hand again...  I continue in that manner until I'm done or I at least decide that I'm done trying to eat for a while.

An instrumental ADL is not something that is necessary for living, but helps a person to be more independent.  Things like housework or grocery shopping are instrumental ADLs.  (How great is that that I can blame my messy apartment on my disability?  Just kidding…).  But it's true, even though nothing is truly stopping me from cleaning or cooking or going to the grocery store, most days I can't handle the mental effort required to interact with people I don't know while trying to maintain a level of decorum.  I am so mentally and physically exhausted when I finally get home from work that it's all I can do to stay awake to do schoolwork.  Forget cleaning and cooking, there's always another day for that.  My cute little kitty cat (was it ever necessary) would qualify as an Emotional Support Animal (ESA).  There are a lot of weeks where the only reason I go to the grocery store is because he is out of food and I'm not going to let him go hungry.  Me?  It doesn't matter if there's no food in the apartment, I'll figure something out.

The whole purpose of me getting the service dog is to assist with these ADLs; to make it so I can live independently without sacrificing parts of my life.

I'm not afraid of the "D-word".  Being offended by a word gives it power; if I don't care that I am a "Person With a Disability", then neither should anybody else.  Disability is a label sure, but it's a label that says I can't be discriminated against.  A label that says I can't be passed over for a job.  A label that says its illegal to kick me out of a public place or to deny me service.  It's a label that says I'm entitled to have a service dog and to go out into public with them.  Why would I be offended by that?

Other people think that I should.  That if you say I have a disability you are somehow offending me or saying something that isn't true.  I can't speak for every person with a disability; but I know saying I'm disabled doesn't offend me.  I can and will do whatever I want to.  I won't let my disability get in my way.  I can't however ever serve in a branch of the military or become a surgeon (can you imagine?) and I would never subject innocent patrons to me and my ticcy-self as a waitress - those are by the way, the three jobs I have decided I should never try to hold.  But that's it.  My disability doesn't stop me from doing things; it just makes them harder.  Which is my burden to bear, not anybody else's.

It always amazes me when neurotypical people have a problem with a person with a disability.  One of my ex-roommates had a friend over once who apparently said something along the lines of, "Can't she just stop that?" in regards to my squeaking tic.  Yes, that tic is loud and obnoxious.  And yes, I too wish it would stop.  But do you really think I would be doing this on purpose?  Do you really think that if given the choice between being obnoxious and embarrassing to my roommates and myself and being quiet, I would choose the obnoxious ticcy route?  Who would?  This is what kills me about "normal" people.  I didn't choose to be this way.  I can't help it.  So why would you think I could?  Why would anybody think that given the choice, I would choose a disability?

People have asked me if I am embarrassed by my tics.  People have also argued with me when I tell them no.  They assume that because it is something they would be embarrassed about, that the feeling transfers.   Not so.  I refuse to be embarrassed by my disability.  And I stopped apologizing for things I do a long time ago.  Why should I?  I’m not sorry when I’m disruptive in a movie theater or when I make a lot of noise at home and I have people there.  I’m not apologetic when I throw silverware on the floor at a restaurant and I have to ask for a new fork.  I’m not sorry if you come up to close to me out in public and I hit you.  I make certain to remain arms-distance away from people I don’t know.  If somebody is insistent on standing closer to me, too bad.  It isn’t my problem.  I would apologize if I made a mess that somebody else had to clean up (like if I knocked over a drink at a restaurant), but not for the obvious reason.  I would be sorry that somebody had to clean it up, but I would not be sorry that I did it in the first place.  I would not be humiliated or embarrassed that I had done it.  Because my tics do not embarrass me.  I cannot control them.  The same way you cannot control a cough or a sneeze (which I know people apologize for and my question is why?).  Why would I waste my time apologizing for something I cannot control?

A lot of people assume this attitude is a front.  That it’s a defense mechanism I’ve created over the last handful of years and that really, deep down, I am humiliated and embarrassed by these things.  And they’re all wrong.  At first, yeah, it was a farce.  It hurt when people made fun of me or imitated me and I was embarrassed when I made a scene out in public.  Over time though, it has turned into how I truly feel.  Eventually I realized that instead of merely pretending those things didn’t embarrass me, they actually didn’t embarrass me.  Instead of pretending that what somebody said or did didn’t hurt my feelings, those things actually didn’t hurt my feelings.  I am proud of the fact that I can walk into a crowded room full of people I don’t know and truly not care one whit what any of them think or say about me.  And that’s rare, a lot of people act that way, but they don’t mean it.  I do.  I refuse to be intimidated by people who know nothing about me.  Neurotypical people don’t get to intimidate me into not doing things I want to do or make me feel bad about doing something I have to (like the poor sap who got stuck next to me on this itty bitty airplane – who is thankfully, asleep).  I’m the one with the broken brain unbalanced brain chemicals.  I’m the one who has to deal with this disability.  

The “D-word” is not a four-letter word in my vocabulary.  I have plenty of other ones to use when I’m having a bad day, trust me.  I don’t need any more.  I view the phrase “person with a disability” as a tool at my disposal.   It means I am protected under the Americans with Disabilities Act.  If I waltzed around and refused to use the word disability when I needed to or even worse, refused to admit I had a disability, I would not be able to use the ADA.  I wouldn’t know I was entitled to it and I wouldn’t have the vocabulary necessary to get accommodations I needed.  I won’t give unnecessary power to a mere word, things like “person with a disability” are just a tool.  Things like the “R-word” do get under my skin.  They have no place in our society and in our youth’s vocabulary (and yes, I have heard this out in the schools and in my jobs and trust me, my kids always get an earful about using the “R-word”.  And they always act shocked, like no other adult has told them how inappropriate it is.  Which is the real problem… but I digress).  The only place it belongs is in a medical diagnosis or on an IEP.  But, the youth of this generation has decided to twist the word into something icky.  Something wrong.  The “R-word” does have a “four-letter word” quality about it.  Because of the way it is utilized.  Not because of what it actually means.  So we adapt our language to create new diagnoses and ways to talk about the same thing without having to use the “R-word”.  And if one day some, a new generation of youth looking to create shock value from a word with nothing better to do and no understanding of the actual definition and use of a word (sorry – this is a soap box inducing issue of mine) decide that “disabled” should be a slur, then sure, I’ll take issue with it.  Until then I’ll be happy with my ADA card in my wallet about my Tourette’s and my new ADA card come September about my service dog.  And I will relax in the knowledge that saying I’m a person with a disability protects me from people with no couth and no empathy or understanding.


  1. Wow. Just wow. I am so glad I read this and that you sent me over here. I was falling behind on my blog reading. Are you okay if I share this on my blog? If not it's fine but I think this is a very powerful blog entry and people could really benefit from reading this. Your explanations and feelings regarding your own limitations and 'disability' have really inspired me to think things through how I view my own obstacles within my life and how I dont' have to let the word disability be a four letter word. Thank you so so much for sharing.

    1. I am honored that you would want to share this on your blog. Please, feel free to. :)