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February 6, 2011 / Amanda Forest Vivian

“more normal = progress”

(I am kind of into the idea of making this post longer and longer as people add more examples. You’re invited to contact me or comment with examples, or corrections and supplements to existing examples.)

It is pretty common for professionals and laypeople to think that “progress” (i.e. becoming less impaired) for someone with a disability means that the person is less obviously disabled or ceases a particular behavior that was unusual or was associated with their disability. Sometimes when I write about this on my blog I call it passing as ethics because of the way it can be applied to autism. The idea is that if you act more like other people, or your behavior pleases more people, that’s the same as being more morally good. But actually, the basic structure of this assumption (more normal = progress) is applied to many other accomplishments besides social ones, and many other disabilities besides autism.

I want to examine this assumption and provide examples of how it affects people with different disabilities, because I think if you only see a narrow piece of the whole phenomenon it’s easier to believe that the mn=p assumption is correct. My hope is that by showing how broad the assumption is, and how obviously ridiculous it is in some situations, I can convince you that applications of mn=p are easy to accept because the assumption is a cultural reflex, not because it is actually true in most cases.

(I’m talking about some broader categories while also including some specific disabilities that are included in the broader categories; for example, there’s mn=p as applied to mobility impairments and developmental disabilities, but mn=p as applied to cerebral palsy can be very distinct from general developmental disability mn=p and mobility impairment mn=p.)

mn=p + deafness

Some people thought, and think, that deaf and hard-of-hearing people should communicate by lipreading and speaking (oralism) instead of by using sign language (manualism). Theoretically, this sort of makes sense because the majority of people communicate only by speaking and listening, and don’t know sign language; so it seems like oralism would give deaf people the ability to communicate with more people.

However, in practice, oralism doesn’t work for a lot of people. If you don’t have any hearing, you can’t understand the majority of things people are saying just from lipreading. Your speech is also likely to be difficult to understand. Even if someone is successful or semi-successful at speaking and lipreading, it still may be really really difficult and exhausting for them to communicate. For a lot of deaf people, the drawbacks of having speech and lipreading be their primary means of communication outweigh the benefits; or there may not be that many benefits because they may not be that good at it. And because of Deaf culture, communicating primarily in sign isn’t something that dooms a person to a life of isolation.

For a long time lipreading and speaking was thought to be the best way for deaf people to communicate. A lot of hearing parents and professionals still encourage it from deaf people. As explained, there are obvious reasons this was and is wrong.

Source: basically I learned all of this from watching an eighties movie, which is embarrassing. A blog would be a nice source if you can think of a good one. I also have a book downstairs that talks about Deaf culture and includes some of this history, but as I said it’s downstairs and I’m up here. I remembered this comment also.

mn=p + mobility impairment

Dave Hingsburger, who uses a wheelchair, recently made a post called Don Your Thinking Caps describing something that happened to him. He was faced with a sidewalk that wasn’t wheelchair-accessible, and ended up having to walk, bracing himself on his partner Joe. An acquaintance saw him walking and excitedly said, “Good for you! I knew you’d get out of that chair one day.”

This is an obvious example of mn=p because Dave obviously wasn’t cured (since he needed support to walk) and this type of walking wasn’t better than using a wheelchair (since he needed someone else’s help, and was probably physically uncomfortable), but Dave’s acquaintance still perceived what was happening as “good” and better than his usual situation.

mn=p + cerebral palsy

A lot of what caused me to start thinking about the universalism of mn=p was the fact that I happened to come across and read Playing Cards at the Boston Children’s Hospital by Lisa Blumberg, and then started reading Norman Kunc’s writing in the same week. They both have cerebral palsy and the pieces I read showed how they experienced mn=p at the hands of professionals.

In the interview The Stairs Don’t Go Anywhere, Kunc talks about how he was affected as a child and teenager by the fact that he attended a segregated school and was given intense physical and occupational therapy. “The more I could reduce or minimize my disability the better off I would be…I fundamentally saw myself as deficient and abnormal. I saw myself as inherently different from the rest of the human race. The implicit message that permeated all my therapy experiences was that if I wanted to live as a valued person, wanted a quality life, to have a good job–everything could be mine. All I had to do was overcome my disability…I wanted all those things…so I ended up declaring war on my own body.”

Kunc obsessed over trying to make the way he moved and spoke seem more normal, until college, when one of his friends asked him why. Kunc then realized, “I had the right to be disabled.”

This is a quote that really resonates with me. A lot of non-disabled people, including professionals, seem to think that disabled people would like to be told we’re not really disabled or that we’re less disabled that we are. I can’t speak for everyone, but for me nothing could be less true. If someone overestimates my abilities, that doesn’t keep me from knowing what my actual abilities are; it just means that I feel like the person won’t accept me unless I pretend to perform above my ability level. So “being disabled” actually does feel like a luxury, something you can be forbidden to do even when you really really want to.

I can see an argument that mn=p doesn’t actually apply to Kunc’s experiences. He may have experienced progress; he doesn’t say whether his physical therapy improved mobility and decreased pain. Instead, he argues that the most important parts of life aren’t about the severity of your disability, but your happiness and independence. So Kunc’s story could be read as showing, instead of “more normal doesn’t always equal progress,” “progress (if progress means that someone becomes less impaired) is not always as important as other things, like self-esteem and relationships, and shouldn’t be valued above those things.” I think this second point is also true and is really important, especially because the obsession with progress has a very negative effect on the lives of people whose impairments remain static; they’re seen as people for whom nothing can be done.

But that’s not exactly what I’m discussing here. Fair enough. Blumberg’s story is a much more cut-and-dry and mostly focuses on her experiences as a college student when she was pressured into getting muscle surgery on her legs. Prior to the surgery, Blumberg experienced no pain and got around at a satisfactory speed, although one physical therapist criticized her for not caring about how her gait looked: “You don’t concentrate. You just go–like you think you walk normally or something.” (Blumberg told her mom, “They exalt form over substance.” Exactly.)

That same therapist, and a doctor Blumberg calls Pan, kept trying to convince her and her mother that she should get surgery. Blumberg and her mom were told that the surgery would “give [her] a more normal walk, a better appearance,” and when they said they didn’t care about that, the doctor started telling her that her hips would dislocate within ten years if she didn’t get the surgery. He ended up lying to her and her mother about the dangers of refusing the surgery–which, when she agreed to it, caused her intense pain and negatively affected her mobility. As a much older adult, Blumberg found out for sure that the surgery had been unnecessary and was even considered brutal.

This is an obvious bad application of mn=p. Blumberg saw herself as being at an acceptable level of ability; the only treatment she wanted was physical therapy to maintain that level or raise it if possible. The doctor and therapist saw her as someone who needed to be fixed, apparently in part because the way she walked made her disability obvious; their attempt to make her more normal actually increased her impairment and was the opposite of progress.

mn=p + developmental disabilities

In his post Just Stop It, Dave Hingsburger writes about a woman with an intellectual disability whose staff took a stuffed animal away from her because having a stuffed animal is associated with childhood and therefore is a stereotypically disabled behavior for an adult to have. This is obviously not progress because it didn’t lessen the woman’s impairment, and probably made her life worse by taking away something she loved.

I can think of lots of similar “mental age”-related examples that I’ve either read or seen. I remember an instance of anti-autism rhetoric that involved a woman complaining because her son wanted to dress up as Mickey Mouse while other kids his age were dressing up as Lord of the Rings characters. This was obviously intended as an example of how impaired the kid was but, like enjoying stuffed animals as an adult, it is an example of difference, not impairment.

You could argue that this boy was impaired in his ability to realize what other kids were doing and copy it, but this wasn’t stated and I think it is disingenuous to pretend that kids are always copying each other–it happens, but also, non-disabled people may just naturally resemble each other and if a disabled kid is different that doesn’t necessarily mean they understand trends less than non-disabled kids. Also, people can choose to deviate from the norm, knowing that they are doing so.

I can kind of understand this application of mn=p more than other kinds, because so much evil has come out of the idea that people with disabilities are eternal children. But being an adult can include the decision to enjoy things that are stereotypically enjoyed by children, and in fact, being forced to “act like an adult” is a pretty clear indication that you’re being treated like a child.

mn=p + autism spectrum disabilities

First, a stark example of mn=p as applied to autism, which I’d also classify as passing as ethics, from Zoe’s post On Lea’s Terms; a staff person at a place Zoe volunteered told her that a non-disabled child was there to serve as a role model for children with autism, even though the non-disabled child behaved in a rude way.

Since mn=p as applied to autism is kind of my specialty and the reason I started blogging two years ago, I hope it isn’t obnoxious for me to just link to my first pieces about it (for the record, I don’t agree with some of the language I used back then). I think mn=p often happens to us quite intensely, so people write about it a lot and I certainly don’t mean to imply that my stuff is the only stuff covering mn=p + autism. Nothing could be further from the truth; I’m lazy, is all.

I became passionately interested in anti-ableism because I interned at a school for kids with autism where many of the behavior goals for the students were focused on normalization. It was obvious to me, a young adult with an autism spectrum disability, that the achievement of some of these goals would not increase the quality of life or social success of the students. I had learned enough about passing in real life that I had a problem with the professionals who automatically assumed passing could be taught or that passing equaled progress.

I wrote Functional Stimming in response to the school’s unquestioned assumption that stimming (behaviors common among developmentally disabled people, like vocalizing, flapping hands, and rocking back and forth) was a bad thing. I discussed how stimming could improve someone’s functioning, and how my functioning had been negatively affected by trying to repress stimming. I also wrote Pulling Rank and Involuntary Assimilation in which I described the way the school gave status to people based on how normal they looked and acted, and explored the benefits and drawbacks of passing for people with ASD. One thing I mentioned was that passing could actually limit a person’s ability to be successful socially, because of the emotional drain on the person, and the fact that their relationships would be compromised if other people weren’t aware of an important fact about them (their disability). I concluded that the obsession with normalcy came out of a society that didn’t value disabled people, rather than normalcy being innately better for us.

mn=p + multiple severe disabilities

(This particular example really disturbed the hell out of me so if you are triggered by discussions of restraints I would recommend you skip to the final section, mn=p + anything.)

The blog Single Dad, Disabled Daughter is written by a guy whose teenage daughter, Pearlsky, has severe physical and intellectual disabilities–although the latter is hard to measure because she has never been able to communicate in a measurable way. Because Pearlsky has so little control over her life, Single Dad was confused that her school staff’s main goal for her was to get her to stop putting her fingers in her mouth. Presumably they disapproved of this because it wasn’t good for her skin, as well as because of the stimminess (that is, disabledness) of the habit.

Single Dad wrote Pearlsky’s teacher an email trying to explain why he didn’t have a problem with the stim (I’m editing it for length but it’s a fantastic email; I wish more parents had his value set.)

“It appeared that there was some agreement that Pearlsky can control this. I believe you and maybe [the vision therapist] mentioned that you can tell her to stop or distract her, or whatever, and that she can stop doing it, at least for a time…If, in fact, it has a voluntary component, then this is the singular action that we have seen that Pearlsky can repeatedly and wantingly (?) do…I am just saying, if this is the only thing she controls, and she appears comforted doing it, is it really something to concentrate on taking away from her? And, as a last thought, if she has any control over this, then have we not found a purposeful action that maybe we can leverage off of for some form of communication?”

As far as I can tell, the staff didn’t answer his email, and he later found out that they attempted to use restraints to stop the stim (disturbing image warning). This is yet another example of “progress” that is the opposite of progress. Instead of trying to use Pearlsky’s habit to motivate her, or accepting it as something that doesn’t relate to progress but is valuable because it makes her happy, her staff are trying to take away something she likes, and using restraints that cause welts on her arms. This is a bad application of mn=p because it involves causing someone pain for no reason.

mn=p + anything

I wanted to put this example at the end of the post, even though it was actually the thing that originally spurred me to write the post. I think that when mn=p is applied to people with very severe disabilities, that’s when it becomes most clear how completely empty and stupid an equation it is. Like, when it comes to people with more mild disabilities, maybe there are some underlying ideas like:

1. If they get a little more normal, they might look totally normal and won’t face stigma for being disabled.
2. If they get a little more normal, they might actually BE normal and the problems associated with their disability will go away.

And I feel like when #1 happens it can lead to a very low quality of life; and #2 just is very rare or impossible depending on the disability. But I can buy that those things might occasionally happen or that, even if they don’t, the person making the mn=p assumption genuinely believes they might happen. I don’t agree that those are reasonable goals, but they are goals.

But when it gets down to this kind of situation, where someone is severely and visibly disabled, and professionals are trying to take away something that makes them happy because…well, for actually no apparent reason, not even a bad reason? Just no reason at all?

This is the core of mn=p, where it becomes obvious how rotten it is.

It is so rotten that people stop seeing it as even a choice or an opinion or a feeling, and just see it as a fact of nature. If you step off the edge of a cliff, you fall, and if you get more normal, that is progress. Because of the unobtrusive rottenness of mn=p, it just becomes an idea that people follow without even realizing they’re making a decision to follow it. Lots of people follow mn=p who are not cruel people, but just have forgotten that there is anything else.

***
A note on the developmental disabilities section, as I feel it would be biased not to address this: I have read here that the mother who made the Mickey Mouse statement disliked having that particular statement quoted, and said that other quotes would have better represented the “extent of [her children's] disabilities.” So she admits that an unusual Halloween costume isn’t a sign of serious impairment.

However, I can’t help but wonder why she would use that as an example at all even if it was meant to be a minor example. I think that sometimes when people are saying less normal = impairment, and get called out on what they’re saying, they will try to to defend themselves by pointing out that the disabled person they’re talking about actually is impaired in ways unrelated to normalcy. Of course, this isn’t relevant to the discussion, and is a fallacy resembling the harder fallacy, which I’ve discussed before. (I could go on about this, but I don’t want to hijack the post.)

Also I’m truly sorry to anyone who likes math a lot; to be honest I like it too but I wasn’t really thinking when I started writing this post and I obviously get that it’s (mn=p)deafness and so on, and maybe I’ll fix it later.

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16 Comments

Leave a Comment
  1. Zoe / Feb 6 2011 10:49 pm

    I got linked in an Amanda post oh that makes me happy!

    Also: “But being an adult can include the decision to enjoy things that are stereotypically enjoyed by children, and in fact, being forced to “act like an adult” is a pretty clear indication that you’re being treated like a child.”

    YES YES SO MUCH.

  2. Morgan / Feb 7 2011 1:07 am

    Regarding d/Deaf information: The documentary ‘Sound and the Fury’ is really good, regarding the decision of families to get (or not get) cochlear implants.

    • Amanda Forest Vivian / Feb 7 2011 2:25 pm

      I don’t think I’m currently able to watch the whole movie and process it enough to write about it. (It always feels really appropriative to talk about spoons; maybe I just don’t have time, I wouldn’t know the difference.) Would you be able to explain how cochlear implants fit into more normal = progress? I always hear them being held up as basically a “cure” for deafness that people would only refuse for cultural reasons. Are there are actually other aspects of cochlear implants that make them unappealing to d/Deaf people?

      • calistair / Oct 30 2011 4:43 am

        Well I recently heard some research into cochlear implants:

        -Their risks include possibility of damaging/destroying facial nerves, necrosis of cut skin, a greater risk of meningitis, all of which aren’t properly presented to the families,
        -They are primarily given to infants/young children with no ability to consent
        -They are a medically unnecessary surgery,
        -Often people will then treat them as 100% hearing with no teaching of any Sign Language, no connection to Deaf culture, so social support for ableism, etc.

  3. The Untoward Lady / Feb 7 2011 11:40 am

    I think this concept can go a little bit beyond just disability and impairment, too, and into pretty much any minority group when it comes to value and normalization. Take, for example how in the transsexual community, and especially from people viewing the trans community from the outside, someone who looks more typical (read: who looks more cissexual) is perceived as being someone who is more beautiful even if someone else who looks less like a cissexual person is actually more beautiful/attractive/handsome/sexy.

    And yes, with our bodies looking more like a cissexual person and looking more attractive are often trade offs.

  4. Chelsea / Feb 8 2011 2:23 am

    This is the best post I have ever read! I would love to broadcast it to all the psych major students at my school! I bet most of them are still living off of their textbooks and outside observances as a way to “understand” PWD, and come up with misguided ways to assist them.

  5. Single Dad / Disabled Daughter / Feb 9 2011 1:25 am

    Just found this blog (sort of via your mentioning mine!) and you now have a new follower!

    Are dads allowed to offer contributions?

  6. Laurie / Feb 9 2011 7:25 am

    You just completely opened my eyes to something I had never thought about before. I have a 17 month old daughter who has PWS, among other things, and just starting out on this journey with her. Thank you for your post.

  7. Ole Ferme l'Oeil / Aug 13 2011 11:29 pm

    Thank you for this post, since it is a painful subject, I couldn’t comment earlier.

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