Poisonous Expectations

Poisonous Expectations

There’s a toxic belief permeating all levels of society: that disabled lives are worth less than able ones. In just the last couple of days there has been a political candidate calling for compulsory abortion of fetuses that test positive for genetic conditions such as cerebral palsy, and a columnist in a national (UK) daily newspaper using the phrase “remedial-level dipshit” to describe children with developmental delays.

I have a daughter. I understand having hopes and dreams of what your child may achieve: that’s only natural. What isn’t natural, or at all healthy, is this cultural obsession with perfection. TV, magazines, newspapers are all full of examples of what is deemed to be “perfect” with public shaming and criticism of those don’t live up to this ideal.

Those with physical or mental disabilities are not spared. Portrayed as objects of pity, a modern-day freak show exhibited so that the able-bodied and those without cognitive differences can feel better about themselves, feel thankful that they are “normal”. And don’t get me started on the patronizing “inspirational” bullshit when a disabled person manages to achieve something that the able take for granted.

There is a high level of disability awareness, for all the good it does. A lot of able people feel uncomfortable around the disabled. It would be nice to think that it stemmed from a sense of guilt over that way they treat us, the way they think about us as lesser people, but I don’t believe that’s the case. I believe it’s because seeing us reminds them that we exist in their “perfect” world, They don’t want to be aware of us; they wish we would just disappear and stop disturbing their comfortable illusions.

The majority of language used in depictions of disability is negative: it’s all about deficits, what we can’t do, how we can’t hope to match the standards set for the able. We don’t need to be told: we’re perfectly aware of the areas where we face limitations and restrictions. The thing is, many of these restrictions in areas such as mobility and communication can be overcome to varying degrees by accommodations.

Yes, it costs a bit more to accommodate people who are outside the statistical normal range of ability. But by failing to provide that assistance the message being sent is that we are not worth it. We don’t matter. We’re not even considered a lot of the time, and when we are it’s grudging.

So it’s no wonder, when we face the constant implication that we’re a burden, a tragedy, that so many expectant parents have a fear that their child will be disabled. It’s their worst nightmare: their expectations dashed, their plans in ruin. They’ve been told time and time again about all the problems faced by families in that situation. The fear is overwhelming and colors their feelings towards the child. It fosters resentment — this disabled child took away their dreams of happily-ever-after.

No. The child isn’t the problem, it is their belief in the lies told by the media and self-interested organizations that led them to think that a “perfect” child would automatically bring happiness. The truth is that happiness comes from love and acceptance, from strong bonds and mutual respect. Society has a sick, twisted, poisonous view of what success looks like, and a long record of destroying those who drink the kool-aid and fall short of the unreachable goals.

Acceptance is the only way to go. Acceptance of people as they are, not how you might want them to be. Acceptance of difference. And just as important, acceptance of self: discarding all the baggage of internalized hatred, shame and guilt. All children have potential, all children take effort to raise, all children are different. Instead of judging them, dismissing them as failures if they don’t meet some arbitrary criteria, help and support them to explore and learn what they can do.

Give them the tools, and see what they can build.

11 thoughts on “Poisonous Expectations

  1. Reblogged this on bunnyhopscotch and commented:
    Another powerful post by Alex. This reverberates deeply in my consciousness.
    “You are expensive!” “Do you know you cost more than any of your siblings?” “Do you think I ever wanted a child like you?” Sticks and stones do not actually hurt as much as words. Ableism begins at home. But so does inclusion and acceptance.

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  2. Reading this, I feel really relieved to have had a supportive family. They were shocked that I wasn’t as athletic, knew on some level that I was different, and frequently tried to enforce social rules, but they never made me feel as if I were inferior.

    Liked by 1 person

  3. I get your comment about the patronizing remarks.
    I think a lot of people generally think that some of us have poor IQ’s, and that some of use will be a genuine, ‘burden’ to society. I happen to believe that there is a ‘genius’ in all of us, and it is simply a mater of time in trying to find what the genius thing is….and of course monetizing it;-)

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  4. Alex,
    Fantastic post. Thank you.

    I used to be a chair of trustees of a school in Bristol for SLD youngsters, primarily at the severe end of the autistic spectrum. The school was based on the Steiner school principles and the associated Camphill movement and is an absolute gem.

    Why mention the Steiner link? Well, one of the important points is that it means that they view the human being as having a spiritual aspect. Although this may mean there will be many cries of outrage from the prevailing culture, the primary difference I noted was that it meant that EVERY human being regardless of disability or otherwise is considered as having an intact inner spirit that is trying to work through the body that they have been given.

    Now, regardless of whether you agree with the basis of this view or not, it allows you to take a far more positive view of any disability and realise that it is a chance for everyone involved to grow and mature. Thus it is not something to be shunned. The drive for the ‘perfect’ is a power game and a control strategy. A chance to stop being truly alive.

    When I was a trustee at this school there would be frequent times of feeling absolute awe and humility at the process of the youngster’s education. To me it felt that you could actually see times when that inner spirit would shine through in the youngsters and illuminate everyone around them. An experience totally at odds with the ‘burden’ view normally portrayed.

    Once again it is society’s focus on the results instead of the process that is hampering our culture. That is only because it is seems simpler. Though the really really scary part of what is happening with this compulsory abortion policy is its closeness to what happened in Nazi Germany before the war. Ouch!

    Please note that I am not going to judge any individual case of parents deciding to terminate or keep a pregnancy. It is up to them to decide what they should do. The crime would be to have a blanket state sanctioned policy which would be a fear based response to the world not being ‘in control’. Indeed I have a very close friend and his wife who decided to keep such a child would have fallen under this policy. And naturally the little boy in question is an absolute gem and I would not have been without the chance to meet him and see him grow through his childhood, difficult though it can be at times. My friend and his wife feel the same way too.

    The truth is that with acceptance, greater knowledge and integration of such ‘disabled’ folk, we all have a chance to grow and develop ourselves more in what is, in my experience, a truly humbling and enlightening process.

    What more could you ask from life?

    Liked by 1 person

  5. “Yes, it costs a bit more to accommodate people who are outside the statistical normal range of ability.”

    It does in the short term…but what about the costs in the long term of *not* providing accommodations? And not just to the self-worth and dignity of disabled people (as if that weren’t enough), but to tax revenues, for instance, or money that disabled people aren’t spending if things like public events or businesses aren’t accessible?

    Disabled people are routinely presented as a cost to society. But how much, financially, is society cheating itself out of by not allowing disabled people to reach our full potentials in education and employment?

    Liked by 1 person

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