Selfish Advocacy

You know why I care so much about disability as a civil rights issue?  It isn’t just about my son.  I also care about disability rights for an utterly selfish reason.  Me.  Yes, me.  I’m not considered disabled, yet, I live with 100% certainty that I will experience disability in my lifetime.

Disability is just a matter of time.

I don’t want you to read that last line with the theme of Jaws playing in your mind.  Maybe something more along the lines of Dvorak’s New World Symphony.  Disability is a natural certainty of all human existence.  I look around me, and don’t see disability as intrinsically negative, but rather something that shapes and defines our very existence in often beautiful ways.  It is part of the package.  The cycle of life and death is all shaped by difference, whether race, age, gender, sexuality, body type, or disability. That’s a good thing; difference gives our lives depth and meaning.

I might not have been born with a disability, but there will come a day when I join that group.  It could be tomorrow—a car crash could injure my spinal cord and I’ll become a wheelchair user.  It could be next week—I might develop fibromyalgia.  It could be years from now—I’ll have a stroke that will change my brain and its functioning forever.  It could be decades from now, when the simple process of aging requires that I turn in some of my bodily function and cognition before I leave this world for good.  Like I said, it is just a matter of time.

So I ask myself, what will happen to me if suddenly or gradually become disabled?  When I become disabled, it seems likely that people will mourn me.  Mourn, as if my currently able-bodied, neurotypical self is my “true” self, and the rest is some sort of sad decline—a tragedy even.  No, thank you.

I see my future and I don’t like all of it.  I don’t want disability to only indicate some sort of deficit that warrants exclusion. I don’t want to fight for physical space because the world is only made for people who walk.  I don’t want to fight for emotional space because no one will include me in conversation if I can’t keep up at a certain pace.  I don’t want to fight for space because my need to manage pain, support myself, express myself will be deemed too costly by a society that seems more concerned with shallow material wealth and expediency than anything else.

Our society is so afraid of disability but imagine if we could accept it, embrace it, use it. Fellow human beings with disabilities are advocating about these possibilities every day.  Advocates are speaking, and I’m sad that it took me three decades to listen.

My son.  He’s been born into the world with a disability.  Down syndrome, Trisomy 21, 47 chromosomes.  I mourned his diagnosis, but I look back on that time with some honest regret.  I shouldn’t have had to grieve in order to accept my own flesh and blood, and yet, I did.  What would have been, what could have been, what should have been.  Well, he IS.  Period, end of story.  He’s not some sort of consolation prize given to us instead of a child with fewer chromosomes.  There’s no “true” LP floating out in the ether without his “extra” chromosome.  He has all the chromosomes he’s supposed to have.  

You see, my son and I are in the same boat. I wasn’t born with a difference that our society considers a disability, but I’ll have one eventually.  So I’m selfish and a mother.  I care about disability as a civil rights issue because I want both my son and my future self to be accepted and valued with disabilities, not despite.  I don’t want to admit that I mourned my own son for what I thought he wasn’t, without realizing what he was.   I don’t want to wonder if doctors will wake me up to die after a spinal cord injury.  I don’t want anyone to question my ability to be a mother if I’m disabled. I don’t want change of cognition to mean I’m passed over and forgotten, viewed as a shell of my former self.  Bodies and minds change, abilities change, identities change.  

I can’t honestly say that my advocating is only for my son.  I’m selfish.  It is for me, too.

20 Comments on “Selfish Advocacy”

  1. Gayla says:

    Today is my 63rd birthday, and my 26th year as a parent of a son with Down syndrome. This is beautifully written and affirms so much for me. Thank you for this gift.

  2. Lori says:

    Right on, right on! You are so astute, Jisun.

  3. Theresa Shea says:

    So true!! I often look at humans as sentient beings who can, at any moment, be rendered incapacitated in some form (in my mind I see daddy long legs with their legs plucked off). We’re sacks of blood and bone held together by a thin layer of flesh. Amazing and fragile at the same time. My proud and capable father ended his life strapped in a wheelchair, unable to feed himself and/or speak. I loved him every second of the way.

    • jisun says:

      Funny, I’ve often thought of a memory I have of my cousin who used to cut bugs in half, and I remember thinking about how fragile our bodies are, yet so strong and beautiful throughout.

  4. Diane says:

    Yep…totally agree! Well written my friend!

  5. This is very insightful, and I like your perspective. As we’ve modernized, coming up with better ways of treating illnesses and allowing our life expectancy to rise, we seem to have forgotten the price: learning to live with and love the disabilities that arise from age and incurable physical/mental diseases.

    • jisun says:

      Right, exactly. Everything comes with a price. But I’d also add that disability isn’t just an issue of aging, we are born with disability as well, it is just natural to life itself. As much as I’m grateful for modern advances, we will never “cure” disability, since it is part of life. I wish we weren’t all so afraid if it. :/

      • Oh, I totally agree. My mother worked in special education for over 20 years before she retired, and when I was a small child she worked mostly with children who had severe disabilities.

        Also, though the reading can be a pain (theorists aren’t known for their brevity or clarity), The Rejected Body: Feminist Philosophical Reflections on Disability is a really good critical look at how feminism has been skewed toward a non-disabled pov and what that means for women who are disabled. I’ve just been reading it for exams.

        • jisun says:

          This is a common critique I’ve heard from other bloggers, and not ever having been in feminist academia I didn’t have any first hand experience but a lot intuitively made sense to me, albeit in bits and pieces. Thank you for the recommendation, I will check it out!

  6. Choosing says:

    I have – until now – never thought about it that way… but you are absolutely right! And I guess we better face the truth and think about what can be done. Will need a lot of change in people’s heads though.

    • jisun says:

      Definitely a lot of change. I think we’ve just gotten afraid of some nitty gritty facts of life. Death, disability, difference, struggle, all those things are so natural and even good, but we spend so much time pretending we can live without them. Even beyond complicated systems change, I think just less fear would go a long way…

  7. Mardra says:

    Um, again, what am I supposed to say to this except: Yes.
    Me too.
    and this time, I kinda wish you weren’t right. But you are. So here we go.

  8. Liz Tree says:

    This is such an awesome post. So well written and insightful. Thank you.
    Liz Tree, another Happy mom to another awesome kid, who is awesome because he is he and part of he is his “different-ability.”

  9. […] this is that it could be my kid someday. Jisun at refers to this as “selfish advocacy.” She is not condemning this sort of thing but rather explaining its […]

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