Jenny McCarthy & Autism Part 2: Let’s All Be Normal (Acting)

When I wrote about Jenny McCarthy last week, I focused primarily on how her “cure” efforts affect parents. Today, I want to write about how “cure” efforts affect children with disabilities.

I feel pretty safe in saying that most people who are born with disabilities, or develop a disability very early in life, have experienced the Pressure To Appear Normal. The ones I have talked to have told me that the greatest amount of pressure to Appear Normal has come, either directly or indirectly, from their parents.

In my case, I remember being yelled at by my father after my parents, unaware of how unwell I was, and still am, read the diary I was required to keep at school. Finding out how unhappy I was that way made my mother cry. After that, I only wrote fictional stories in my required-diary at school. I didn’t want to upset my parents by being “sad”. [My parents may have a different understanding of this event. I’ve never talked to them about it. I also haven’t talked to them about my repeated hospitalizations.]

It took me a long time to convince Don that it was okay to talk about being in pain and how he felt about everything. Like me, his previous attempts to talk about his disability led to his mother being upset. His attempts to appear normal means he went over a decade needing far more assistance than he was getting. He felt like a failure for getting a cane, because everyone would “know” he was disabled. Getting the cane, and now his wheelchair, has led to a drastic improvement to his quality of life – and it didn’t happen until he was in his late 20s.

If you read many of the Very Special Lessons-type news media stories about disability, they will often include a paragraph about how the person with a disability’s parents had at some point pushed for them to be in a “regular” school until, giving up, they finally admitted their child needed more help than they were able to get there. It’s often presented as a sadness, that this child couldn’t “overcome”.

From Deaf children being denied Sign Language until their late teens to grandparents refusing to be seen in public with their autistic grandchildren until they can learn to behave, there is are a lot of messages disabled children receive from their families: Be Normal. Look Normal. Don’t upset us by not being Normal.

I hope my last post made it clear that I’m very sympathetic to the situation parents find themselves in. There are simply not enough resources available to help families. There is constant pressure on parents to explain how they “made” their kids disabled, and what they’re doing to “fix it”. I don’t just think that pressure is there. I know it. I know for certain that Don’s mother still feels guilty for “making” Don disabled.

But children are very aware of the pressure to be normal. And when people like Jenny McCarthy and her ilk push “cures” for disability out there, not only are parents asked why they aren’t administering these cures, children are, either directly or indirectly, asked why they aren’t cured, too.

“Why are you still disabled when your disability is curable?”

“What are you doing to make yourself better?”

Try harder. Do more. It will make everyone else feel more comfortable.

10 Comments

  1. Wow! . I still wish my mother dealt with it better, but I feel oddly much better knowing that my mom’s reaction is fairly typical.

  2. Oh God, yes. So much yes. I find it very difficult as an adult child to not appear “normal” around my family and friends, because I don’t want them to be upset when my dysthymia, MDD or generalized anxiety disorder are acting up. Since at least one of them is making me miserable at any given time, this has sadly lead me to being very withdrawn around most people. Like you, Anna, I don’t fault my family and friends at all for this. If anything, they want me to be more open about when I’m in pain and when I need them. I do fault, however, the abelist and psychophobic social attitudes that have drilled into me that my silence is necessary for keeping peace and making people not abandon me, particularly when I already struggle with almost daily feelings of guilt and unworthiness.

  3. D’oh. Totally failed to say, before I hit send, that Carolyn Hax’s response to the grandmother in that column made my month. Where do you think she’d like her internet delivered?

  4. Thank you so, so, so much for this post. Especially the part about having to write lies in your journal.

    Unlike some people, I don’t like having ASD. I’d rather not have it. But it’s just my life and there are lots of interesting things going on and if I just acted upset about my impairments, I wouldn’t be able to do anything or even feel happy. I feel like my mother doesn’t understand this and even thinks that she has it worse than I do because she doesn’t see me going around crying about having ASD, so she thinks I don’t understand or don’t care or something.

    I don’t know if this makes sense or is TMI but I’ve been having a lot of trouble with my mom and that example of yours just hit me really hard. It’s really not fair to have to feel guilty about your own problems or unhappiness, and to feel that you’re somehow hurting your parents by being disabled or ill.

  5. I can painfully remember my parents telling me not to tell my friends I had LDs. Now, everyone ended up knowing but just being told that once made me realize that I was expected to hide my LDs. Now I don’t hide them because I am proud that I have succeeded with my LDs. Note I said with- they are part of me and, in point of fact, can be helpful to me (I see patterns well, have a good verbal memory and am creative). However, because I am a successful college student, when I share that I have LDs, I get the ‘Oh, you must have overcome them/be cured.’ But (a.) LDs are life-long and don’t go away and (b.) I wouldn’t want to be ‘cured’ of them even if it was possible. But explaining that is hard. I especially hate when a parent of a child with LDs says “Oh, I hope my child can be cured” or when they hold me up as an example of ‘what you can do if you just put your mind to it.’ But it isn’t that simple and I am deeply uncomfortable with being the ‘good PWDs’

    I also hate the narrative of mental illness recovery. Because for many of us, there is no line separating ‘sick’ from ‘recovered.’ There is having more issues with the disorder and having fewer issues with the disorder. Yet the recovered/sick dichotomy is the way the story of every mental illness tends to be framed. And it is really, really annoying.

  6. I wrote on this topic three days ago in my post Normalization Wastes Energy. The push for cure has directly led to the push for making neurologically disabled kids appear Normal as “treatment.”

  7. Maybe unlike many, for me the biggest pressure came from my peers and people outside my direct family. My family, despite being mostly autistic too, did a bit of trying to normalise (themselves as much as the children), but the bulk ofthe pressure on me came from elsewhere.
    I do know that my parents got a lot of pressure from their family about us, also from other people.

    And trying to appear normal does waste vast amounts of resources. Even when I was willing to and did put in as much as I could to appear normal, I didn’t anyway. And back then it was literally the only thing I was doing because I was putting everything into it, couldn’t do anything in a day but that and just sort of hang around and do whatever costs nothing else.

  8. “there is are a lot of messages disabled children receive from their families: Be Normal. Look Normal. Don’t upset us by not being Normal.”

    “Try harder. Do more. It will make everyone else feel more comfortable.”

    YES. THIS. This is exactly what my parents do, all the time. Thank you for finally articulating it!

  9. My parents kept me oral until I was eighteen because they believed normal was better, despite a lot of evidence to the contrary, such as screaming breakdowns because I couldn’t communicate how unhappy I was. I only learned to speak clearly through expensive speech therapy and digital hearing aids that were finally powerful enough when I was fifteen-sixteen.

    So yeah.

  10. @OP: I absolutely identify with this post.

    I have a minor deformity from birth in one hand, a good deal of anxiety and depression that hit really hard in my adolescence, and I have muscular dystrophy and use a cane–occasionally a wheelchair. The cane sat about for a year before I was (reluctantly) ready to use it. Anxiety did not help with that one–I had a hard enough time wearing non-plain T-shirts…

    So I very much relate to this post, thank you for articulating it, Anna.

    I’m sure my parents felt some pressure vis-a-vis me, but they’re Mormon, and Mormons have odd ways of thinking about disability and such (very ablist and prone to speculating that god made you like X because you were spiritually stronger, or needed to learn Y), so I’m not sure how that would play out.
    My minor mobility issues as a kid probably looked like bad parenting to some people, so that was probably a source of pressure on my parents, though I wouldn’t have know it then.

    There were many ways in which I came close but couldn’t quite appear normal (I could only run so fast to keep up with other kids, or to try and play high school football). I also know that my attempts to hide my depression and anxiety may have kept them from my parents, but resulted in lots of social differences that still stick out, even if they were not identifiable to others.

    This has played out such that I’ve tried to be very normal and do normal things that people without my problems are doing in some of the circles I’m in–and I’m finding that trying to accommodate ablist notions of normalcy is not only impossible; it’s no longer even appealing.

    @KJ: I think I’m beginning to understand how bad the narrative of mental illness recovery really is, and just how much I’ve internalized it.