i have a disability (like it’s my JOB).


Wow-wow-wow kiddos, what a year thus far. You know as well as I do that I am all flattery and empty promises when I talk of blogging regularly. And with a new job, and a wedding to my Favorite Human to plan for later this year, I have to admit: blogging for all you fine people has taken a backseat. I am up to my eyeballs in thoughts, feelings, financial obligations, and to-dos. So while my Social Network [and Skype, of course], have been a-buzz with activity, the blog has been silent. Recently, though, my friend Mary Evelyn wrote about her son [probably my second favorite human, let’s be honest]. She wrote about Sim’s disability: about why it does define him, and how she’s okay with that.

Along with my usual being moved at her kind, honest self-expression and love, I thought:

Wait a second. I have a disability. Does mine define me? And if it does, am I cool with that?

I started to really think about my life, and how my Cerebral Palsy [and the brain damage and physical limitations associated with it] have affected me:

Image

Photo by Juliana Finley

It dictates how I carry out every single daily activity: getting in and out of bed, getting ready, commute/traveling, the layout and use of my office, meal prep and cleanup, social time and entertainment [I’d love to come along! but are you sure it’s accessible?]

It has influenced my social circles: From infancy forward, having “disability” in common has helped me forge a strong, loyal subgroup within my peers.

It has ended up setting my path for my career, and my education. My work has been entirely disability-community focused for the whole of my adult life, and it is precisely because of my interest in those not-for-profits that I pursued a Master’s, I wanted to be able to work more effectively for the disability community.

It affects the way I view the body in general: no illusions about a perfect one here

It has attuned me to social issues. Many people with disabilities are living at low income and are marginalized/discriminated against, made to feel distant from their otherwise peers because of an arbitrary characteristic. Because of experiencing this first, second, and third-hand, I can’t stand to see any subgroup marginalized or mistreated, no matter how different from me they are.

It has affected my spirituality and worldview: I have flatly turned down a barrage of faith-healers, insisting that there is more to faith and healing than they are offering. And it has made me think deeply about how I see myself in my subconscious [helping me grapple with the uncertainties of self-perception and strange dreams]

"Autorretrato con el Retrato Dr Farill" (Self-Portrait with the Portrait of Dr Farill)

Frida Kahlo

It’s true: my disability has determined and dictated almost all of my life decisions: what I do and how I do it, who I know, and even the apartment where I live [ground floor, baby!] Yet, that doesn’t satisfy me. My disability might have  a lot to do with how someone would describe me, but to define me, you need to take into account much more. What about Orthodoxy? Or Beatle-fandom? What about social and political beliefs? What about my interests outside of disability advocacy?

I was still stumped: does my disability define me or doesn’t it? If it doesn’t, what does? What am I going to tell Mary Evelyn?! WHO AM I??

Then I thought about how having a disability often turns you into a spokesperson. Like it or not, to survive and thrive as a person with a disability or a loved one of that person, you become an advocate. You learn to speak up for your rights, your needs, and your wants in a world that is sometimes unsure how to communicate or interact with you. For me, having a disability is an [almost] 24-hour-a-day job. I represent disability to some, I speak for it to others, and I am expected to be an expert at it. Living with a disability and making the best of it is part of my purpose; it is literally my life’s work.

While discussing this with John the other night, I smiled and said: if my disability is my job, you must be my time off. You may be an advocate: for yourself, for your child, for a cause, for the civil rights of yourself or a friend. That’s great. Keep living your life passionately and with dedication. But keep balance, breathe deeply. Take your advocate hat off every now and then, just long enough to recharge. And remember to have people near you who can be your advocate, your cheerleader; with whom you can be fully yourself.

Yes, I have a disability. Sometimes it feels like my vocation, mostly like my occupation. Disability describes me; how I choose to face it, and any other challenge or victory in my life, defines me.

What are some of the things that define you [and how do you feel about being defined by them]?

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12 thoughts on “i have a disability (like it’s my JOB).

  1. I think that my disability is only part of what defines me. You are absolutely right when you say that to survive and thrive with a disability you become an advocate. But who you are as a person has to be more than your disability. Let me be the one to say that anybody that can’t move beyond incessantly talking about their disability – “all crippled, all the time” – is flat-out boring. I have CP, I do things differently. I am more than my CP (as are you). By incorporating my disability into the things I blog about I advocate for my peers by stressing that interests and common pursuits are what bring us together, and physical limitations are a secondary issue.
    Alicia
    spashionista.com

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  2. Love this, Beth. You say so well what I fumbled through in my post. There are so many things that describe/define/shape who we are. Disability might be part of that. But the MAIN thing is that it’s only a “part” of a much bigger whole. It is not sufficient. But really, when it comes to defining ourselves, what is?

    Also, that kissy photo is to die for.

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  3. Thanks for sharing something very personal so openly and frankly. I have often felt like a spokesperson for all Greeks and all Orthodox Christians, especially at school (I teach 9th graders) where I am asked a ton of questions when we study The Odyssey and Greek mythology. Surely I know everything there ever was to know about the gods since I’m Greek! It must be coded in my DNA somewhere. Do I worship Zeus? Why not? How can people who were supposed to be so smart believe in something so “dumb”?Why do I wear my wedding ring on my right hand? I try to think of it as a chance to educate, but it can certainly be exhausting having to always field those questions as “the expert” when I hardly feel qualified to answer all of their burning questions. I’ve always been the only Greek and the only Greek Orthodox Christian in school, both as a student and as a teacher, so I’m used to being in the minority. I think it partially defines me, but I know that I’m so much more than those labels. Don’t get me wrong; I’m proud of my faith and heritage. But I am so much more.

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  6. While I try not to let my wheelchair and/or disability define who I am as a person, I cannot deny that they are both a part of my life. Everything you mentioned is so true, even for me.

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