Sunday, February 26, 2012

What is disability when the taboo is taken away?

Strip away racism and the color of your skin only really matters in your risk of sunburn and maybe skin cancer. Strip away sexism and your gender really only matters in your reproductive capabilities. Strip away sexualism and your sexuality really... well... really doesn't matter at all.

But strip away ableism and what do you have left? Well, you still have the disability. 

I'm not saying that the disability is bad. I'm not saying that the disability doesn't allow for other aspects of the person to be "super-abled," far more capable at something than a typical person. I'm saying the disability is hard. I'm saying the disability makes things more difficult at certain times. As an able-bodied woman, I can't speak for people with disabilities, so let me say loud and clear that I know this is true because my son's disability often makes things more difficult for me.

This is why I balk when people tell me that there is no reason to mention a person's disability unless it's in a medical context. It is difficult for me to care for a child with cerebral palsy and I want to talk about it. Saying that I should just ignore it makes me feel like I just have to silently bear the difficult parts — and silently celebrate the joyful parts — because it shouldn't be an issue.

Except that it is.

Difficulty can ultimately be a good thing. Having any child is difficult. Going to college is difficult. Being married is difficult. We grow and learn and change through difficulty and often come out better people with richer lives. But the difference between those things — having a child, going to college or getting married — and having a child with a disability is that almost no one chooses to endure the difficulty that comes with a disability. Is that just because they are prejudiced? Maybe.

Or maybe it's because it is different.

I've tried for months now to come up with an appropriate metaphor. I wanted to say it's like being drafted, but being drafted sounds much worse because you have to kill people. Perhaps, it's like being drafted into going to college, I wondered? You learn a ton, grow a ton and come out the other side better for the experience but it is not at all the path you wanted or imagined your life taking.

Then I realized what it is like. What it is exactly like and it made me wonder why it had taken me so long to figure it out.

It's like having twins. You almost always can't choose to have twins. It's difficult and throws all your plans out the window. It's wonderful and messy and joyous, yes, all of those things, too. But when people see you in the store they know exactly what to say: "Boy, you have your hands full." Or, "Oh, I always wanted twins." Or, "Wow, are those twins?" It can get annoying when you hear these things 10 times a day, but it's not offensive or insulting to talk about it.

I think that's what disability would be like if there were no taboo, no shame. People would understand right off the bat that you were enduring something difficult and wouldn't think twice about commenting on it if they had a mind to, or ignoring it if they didn't care.

That's the world I want to live in. Where Malachi's disability is something I can talk about just as readily as I talk about having twins. Where people feel as comfortable asking me about it as they do about commenting on my twins.

How do we get to that world?


Jessie Kirk Photography




P.S. I tried to find a way to work in this definition of ableism from Wikipedia, but couldn't. I think it is wonderfully descriptive.
A network of beliefs, processes and practices that produces a particular kind of self and body (the corporeal standard) that is projected as the perfect, species-typical, and therefore essential and fully human. Disability is then cast as a diminished state of being human. (emphasis mine)



Stumbo Family Story
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26 comments:

  1. Faith Bryant11:06 AM

    Exactly. If other people didn't put on a snobbish "I'm better than you" attitude and look down on the people with disabilities as a way to cover their own insecurity about their own challenges, things would certainly be different.

    That's what I've taught Benjamin and hope it will be his attitude through life - Everyone has something they are NOT good at. It may be math, it may be social skills, it may be being unable to keep the drool in your mouth. So, why should it be socially acceptable to sneer at the one who drools?

    Keep up the good work!

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  2. Now this is different from what you've been saying previously. *You* wanting to talk about it, because *you* want people to know how difficult it is to raise Malachi, *you* wanting to use it as a way to help alleviate taboos about disability - that's different than people asking about the disability because they are nosy or curious. That is different from you announcing to the moms in circle time "My son has cerebral palsy" because you feel they are all staring and wondering and you want to get it out of the way.

    You obviously are a more open and sharing person - I am not (blog to the contrary, it's pretty well hidden; the blog, that is). I don't feel the need to talk about it (me reading these CP blogs and being on the CP groups notwithstanding) because I don't find it as difficult as you. But I also don't talk a lot about the act of raising kids with other people, because I always feel like it turns into a one-up contest.

    And that is where, I think, our life situations play in to it. I had more time to deal with the possibility of living with disability than you, because had Caitlin lived, she likely would have been profoundly disabled. So we were prepped for that during the pregnancy. Having lost her, I don't view Julia's CP as the tragedy that others whose child has gotten this diagnosis have (and that is me - I recognize that as she becomes more aware of how she is different, *she* may view it as such and we'll deal with that then). And while it does make life a bit more difficult (I have a blog post brewing in my head about it), I was also expecting to have three kids to take care of, and wanting three to take care of, so it throws my idea of "this is difficult!" askew.

    That was my primary issue with your previous posts - that you were hinting that people, like me, who don't want to address it pre-emptively, and who think it's rude in most circumstances for strangers to just outright ask - are trying to ignore it and hope people will too. That's not the case for me. I just don't feel the need, like you do, to talk about it as much.

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    1. And I think I'm going to just stop commenting on these topics, because I am writing way too much!

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    2. Oh no, Amy, I was going to say this on your last comment but I wanted to spend the time writing this post instead.

      I really love and appreciate that you are engaging in a debate with me. I just want to say right off how great that is. It seems like so many people either shut down or get angry/insulting/offended when a difference of opinion is expressed.

      That said I do think our situations are different and I wondered if maybe a reason that you don't want to get in to Julia's CP is that you might have to reveal that her identical sister died. That's certainly not something I'd want to talk about to a casual observer.

      That said, I don't want to give the impression that Malachi's CP is SOOOO difficult. It's definitely become more normal now and just something we do. But it is a thing. And just like having twins, it should come up now and again and should be something that either I or others shy away from.

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    3. I had actually written that discussing Julia often times leads into the other part about Caitlin, and I definitely do not choose to share that all the time. So .yes, part of not discussing Julia until necessary or "natural" has to do with not also wanting to talk about Caitlin. It's like a double-whammy of not knowing how people will react or what stupid things they may say. So yes, that is part of it. And part of it is just me in general - when I was pregnant and people asked when I was due, or what was I having, I never once told anybody I was pregnant with triplets. I'm just kind of private

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    4. Oops, I meant to say shouldn't at the end of the above, obviously.

      That's cool. I'm not trying to judge people for keeping their cards close to their chest. But I do hate the idea that disability issues might get treated dramatically differently than other issues just because of the stigma.

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    5. Hi,
      I am new to blogging, and new to CP. Amy, I can understand from you post thatbyou are a private person and I don't mean to bring up the subject of your lost angel. I just want to say that I can relate to your experience. I gave birth to twin baby girls 17 months ago. One if my twins left us when she was just 5 days old. Now I have my surviving twin who was diagnosed with cerebral palsy. If my daughter Grace had lived she would have probably suffered from disabilities because she had 22q deletion syndrome. I also have a 5 year old son.
      Like you, I also see my daughter's cp (from my point of view) as just part of our lives instead of a tragedy because the tragedy was losing my daughter Grace.

      Delete
  3. Anonymous1:14 PM

    Amy,

    I do think you make an excellent point about the CP community (in general) are always one-upping each other. Either, 'mine is worse', 'I have twins', 'mine has a feeding tube', 'mine can't walk', 'mine can't talk' ect--therefore I have it worse than you do. That is the main reason, unfortunately, I don't interact much on with bloggers or forums out right (I read, but rarely comment). I don't like the constant comparison of "you don't understand". True, we all have our own story, our own struggles, but why can't we all just accept, learn and understand each other as a member of CP community? I just wish the support network for CP was available like the DS or autism community.

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    1. I was about to say how hard it is that CP is such a broad umbrella term, but you're right, Ds and ASD are a spectrum, too. I wonder why there is this difference?

      I don't know that I've ever seen one-upping — I don't know if you're accusing me here of it — but I know that I've definitely felt awkward trying to relate to someone who I feel has it "harder" than me. I have worried that they are thinking "what do you know? At least your kid can eat!" or whatever. I guess this is kind of the other side of the coin you talk about.

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    2. When we were at the CE camp in December, a mom whose daughter could not self-feed (or at least, not if they actually wanted her to get a sufficient amount of food in her) asked if Julia was able to eat in the car - like, could I buy her some french fries at McDonald's and give them to her. When I said yes, she said "you don't know how lucky you have it." I don't think she was trying to one-up me - who knows? But I said "oh yes, I do", because I've read about people whose kids can't feed themselves or have tubes and whatnot.

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    3. Anonymous9:17 PM

      I really don't know why the CP community isn't cohesive like other communities. I have asked my child's doctor because I just don't feel like I have a support base. He said many of his patients (parents) feel this way and he theorized the same thing that I see among bloggers: The mildly affected children's parents don't want to have the stigma of more involved CP (walkers, wheelchairs, tubes, ect) attached to their child and the severely disabled (non mobile, non verbal, ect), it is harder for them to assimilate into social settings as their child is often ignored/left out due to their needs. And then there is the group in the middle (yes, with wheelchairs, gait trainers, and maybe other supportive medical devices), but the children are able to interact with peers in some capacity. Hence, the 'you can't understand' and one-upping begins.

      In addition, since CP is an umbrella like other spectrum disorders/conditions, ours doesn't seem to have an underlying common characteristic. For example, all DS children a genetic component that parents can all relate to. What does CP have?? Nothing really. You are just kind of your own case which, I believe, is why it can seem so isolating to parents.

      I can't say that I am accusing you of one-upping, actually I am really not attacking anyone. I have learned that I am really only interested in learning a different way to help my child, a new idea, or even a different way of dealing with CP. Often I just like reading the daily lives of families who happen to have a CP child. I learn a lot which is why I read a variety of CP blogs; I also disagree sometimes--but that's what I love about having a virtual connection with other parents. I try to filter out the 'I have it harder' and instead empathize with someone having a hard time (temporary or permanently) and celebrate the easier times (again, either a temporary or permanent achievement). Sure, do I wish I had it easier with a walking child who has an abnormal gait?? Sure. Do I completely understand a parent with a profoundly disabled CP child? No. But we all have something in common...CP which should bring us together, not polarize the CP community. I do wish I was able to build better relationships online with CP parents.

      And...maybe I should stop posting, too! My posts are way to long!! :)

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    4. Ha ha, no don't stop! I think this is a really fascinating topic. I've thought a little about it — especially when the boys were really little and friends and family would act like "oh, it'll be OK" and I would think, you have no idea how big CP can get, how many complications there can be, etc. I'm really, really, really grateful that Malachi is doing as well as he is (even though he's not independently mobile in any way), because I know that there is absolutely no reason why I deserve to have it easier than someone else.

      And you're right, there is very little that CP cases have in common. (However, I think poor trunk control is almost universal.)

      I don't know if you read this post http://www.outrageousfortune.net/2011/09/living-life-with-double-dose-of-special.html from a mom of a kid with CP and a kid with Ds, but she's told me that she thinks a major difference between the two communities is that CP parents are super invested in "fixing" their kids, whereas with Ds they just are what they are. This "fixing" mentality may make it harder to connect with other parents because we might see them as competition in a weird way? Like, if we "work hard enough" our kid won't "end up like that"?

      I'm just spitballing.

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    5. Anonymous5:24 AM

      OMGoodness this is an interesting exchange. And when you said low trunk control is almost universal (and maybe it is, I don't know), I immediately thought about my daughter who has too much trunk tone. We spend a lot of time botoxing her trunk to help relax it.

      I think new to the CP world parents are in the mindset of fixing. But once you are in the CP world for XX amount of time, then you shift your thinking to best helping your child achieve their potential. I would estimate this shift occurs during school age years, but again, I don't study or track those type stats.

      I do think CP parents have a hint of competition, but not so much in a "my kid won't end up like that" but more so in a "Am I doing enough?", "is this treatment or that treatment better/worse?", "CAN my child have success like THAT?" and "can I do more/Should I do more". Here's an excellent example, when I read about parents trying the ABR treaments, I think to myself, "what if I am missing an opportunity that could truly help my daughter?". A little guilt slips in that I am not doing enough/keeping up with so-and-so. I have learned, over the decade long journey, that I am doing the most I can do and I have to be content with that. Do I constantly try to make her life easier? Yes. Can I do everything to make that possible? No, I just don't have all the disposable resources needed to make that happen.

      On the flip side, there are some treatments I don't agree with or ways certain procedures are done. When I was newer to the land of CP, I felt that competition creep in of, "whew, I am doing it better; I don't like that method; why is that parent doing THAT?!". Now-a-days, I just take it all in and know everyone can only do so much and we are all striving for essentially the same results (happy and reaching their potential CP children), but we are all on a different path.

      I don't know that I buy DS kids parents are content with their DS child being 'they are what they are' and that is the difference. I also follow many of DS blogs and those parents tend to do everything they can for their kids, too. Therapies, ingration into main stream school...the list goes on and on. They don't sit back contently. I really do believe it is because they have a common thread. I also think it is differences in marketing by the organizations...but that is a completely new post and discussion!! :)

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    6. I remember that post of Andi's and I don't think I agree with the "fixing v. non-fixing." Because DS parents have their kids in therapy - Andi was lamenting why N wasn't taking independent steps, in fact. Unless it has to do with the genetic v. non-genetic component? DS parents know there's a genetic basis that they simply cannot change. But CP parents are told that the brain is elastic and somewhere inside they think if they work the kid enough, they'll "fix" the CP? I know for us personally, we are just trying to make Julia the best Julia she can be, which I don't think equates to us trying to "fix" her.

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    7. Anonymous5:50 PM

      Amy, may I ask how old Julia is? Just curious.

      Yes, I don't think that I am fixing my daughter, I really never thought I could. I do remember being angry when people I knew promised me (when she was under 2 years old) that I worry to much and she will be just fine. I knew she wasn't at 4 months old. She just didn't move as effortlessly as she should. In a strange way, I was relieved when she was older, 3 or 4 years old maybe, because the general public saw her as disabled instead of the baby they wondered what was wrong with. They were able to more easily 'see' her deficits and I no longer felt the urge to justify or explain her challenges.

      Yes, I often tell my providers, this week in fact, that I am 'just trying to maximize her personal results'. I use that exact quote requently at medical appointments. :)

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    8. Anonymous, Julia just turned 3 last Friday. We could tell pretty early on as well that there wasn't something quite right with the way she moved. We were warned she was at increased risk of it in the NICU b/c of her PVL, so we were on the lookout. Plus, it was easy to see that she either wasn't doing things her sister (same age) was doing, or she was doing them in a manner that just seemed wrong.

      Yeah, I don't ever expect things to be easy. Even things she can do - like roll and commando crawl - you can still see the effort it takes her to do it, and sometimes still it'll require 1 or 2 or even 3 tries before she flips over. Easier than when she first did it, yup, but still not "easy".

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    9. Anon: I actually said *poor* truncal control is universal. In people with TBI, i.e. later in life, they often don't have issues with their trunk unless it's really severe or whatever. I theorize that that's because human brains develop (organize) their motor control around their spine.

      Yeah, totally, I agree with the "competition" being more of a "am I keeping up with the Joneses?" type.

      If I'm honest I have to say I'm moving away from the fixing mentality as Malachi gets older. It's hard. But I don't have a choice and besides, it's exhausting! :)

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    10. BTW, in case you're interested, I did this post in this same vein of genetic vs. injury special needs:

      http://www.outrageousfortune.net/2012/01/what-if-its-not-cerebral-palsy.html

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    11. Anonymous6:00 AM

      Shasta, I did in error inter-change the word choice poor and low when referring to trunk tone. I have a rationale to why, but it really doesn't add anything to this thread. I apologize for misrepresenting you.

      Delete
    12. Oh, it's no big deal, I just wanted to clarify. :)

      Delete
  4. Anonymous9:23 PM

    Amy said: "you don't know how lucky you have it." I don't think she was trying to one-up me - who knows? But I said "oh yes, I do", because I've read about people whose kids can't feed themselves or have tubes and whatnot.

    I completely agree with you. It's all about context.

    There are blogs out there, though that I follow, that do openly one-up on a regular basis.

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  5. This has been such an interesting discussion! My perspective is a bit different because I don't have a child with CP, I have a husband with CP. And while husbands are sometimes like big kids, being a spouse of someone with CP is in some ways the same and in some ways different.

    The quote that caught my attention from your post was: "That's the world I want to live in. Where Malachi's disability is something I can talk about just as readily as I talk about having twins. Where people feel as comfortable asking me about it as they do about commenting on my twins." I very much agree! My husband (and I) welcome people asking about his CP. We don't mind at all when kids are curious and ask about why he walks the way he does. We don't want their parents to get nervous or discourage them from asking because it is something that we don't want to hide and we don't want people to see as taboo. We like to educate and remove the stigma of "disability."

    And I also think that as one someone commented above CP seems to often be about "maximizing personal results." Hubby continues in that process with his physical therapy as a 30-something year old. It is all about achieving and maintaining his personal best.

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    1. PS - I didn't realize it would post with our blog title of Chubby and Crutch. My husband and I often use humor in dealing with the challenges that life sends our way. I am overweight and I told him when we were dating that we weren't "Starsky and Hutch," we were "Chubby and Crutch." If you or any of your readers find this offensive, I would be happy to post anonymously in the future :) Our blog does address challenges and joys of married life and how CP affects our world. Thanks, Lisa

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    2. lol, I think it's a great name! I love hearing about adults with CP since my world is so focused on kiddos right now. I'll check out your blog!

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  6. I meant to comment a while ago - but somehow I got busy. I can't imagine why. Anyway - I was going to tell you - although I don't want t talk about it with everyone I meet or interact with, sometimes I DO want to be able t vent and share struggles without getting looks of pity or misunderstanding or one-uppedness. The place where I do this is with my local, in person support group. It took me a LONG time to make connections and find a group of people I truly connected with in person, and then we clicked and meet monthly for a moms night out. Turns out I'm the only one with a child that doesn't have something genetic, but we all have kids that have some pretty extensive needs, and all of them look different, but we find we struggle with similar things (most of the kids have brain issues of some kind, metabolic or mitochondrial disorders and generally seizures). Because we are all local we can also talk about resources, doctors, treatments etc. This group is AWESOME. You can't just do it with whoever though - I had to connect with these women as friends too, not just our kids' disabilities connecting us, even if that's what brought us together. Having this place to be honest about our lives gives me the chance to talk about it without having to talk about it with people who have no idea what to say, and then I can spend time with the general public helping them understand disability, while the support group is for ME alone. I highly suggest starting with one or two people you know - keep it small and go from there.

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    1. That sounds great! I know a handful of moms locally, but I don't know if I could convince them all to prioritize getting together regularly! It's a good idea though! I can totally see how having a time and place for certain subject matter would be good!

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