Posted in Developmental disability service system

They decide what helping is, even if it isn’t.

A woman reaching her hand down to help a boy. The boy, who has no legs, stares doubtfully up at her from his skateboard, not taking her outstretched hand. Photo from Mouth Magazine.
A woman reaching her hand down to help a boy. The boy, who has no legs, stares doubtfully up at her from his skateboard, not taking her outstretched hand. Photo from Mouth Magazine.

Here is one picture of helping.  Here is another.

A woman reaching her hand down to help a boy. The boy, who has no legs, stares doubtfully up at her from his skateboard, not taking her outstretched hand. Photo from Mouth Magazine.
A woman reaching her hand down to help a boy. The boy, who has no legs, stares doubtfully up at her from his skateboard, not taking her outstretched hand. Photo from Mouth Magazine.

Pictures of helping deserve a second look.  The photo at right, from a cancer camp, shows a helper offering her hand.  Should the boy accept this offer, on the trajectory indicated, he will lose his wheels and dangle, helpless.

He can see it coming.  She cannot.

He will, all his life, be the real expert on what help he wants or doesn’t.  That is exactly not what is taught to students at helping schools.

He will learn:  (a) that not all help is helpful, (b) that he must find graceful ways to decline even ill-conceived help, and (c) that gratitude is required in any event.


Mouth Magazine, Who’s In Charge: Excerpts from a Pictorial Essay, Lucy Gwin

The above is an incredibly important thing to understand about the developmental disability service system:  They think they know what is helpful to you.  They think you are not able to see how their help might be unhelpful or even harmful.  They think that if you object, you are just resisting the help you clearly need and that they need to help you learn to accept their goals for you.

As the article says, we can see these things coming.  They can’t.

And we’re treated like the only reasons we react the way we do to less-than-helpful help is things like this:

  • We have cognitive disabilities and therefore don’t know any better.
  • We have an emotional attachment to getting help we don’t need.
  • We are afraid to try something new.
  • We are afraid of independence or responsibility.
  • We are lazy or slobs by nature.
  • We are stubborn and defiant.
  • We just want to make trouble.
  • We are mean or rude.
  • We just want to make them feel bad.
  • We are like children who can’t understand when adults know what is in our best interests.
  • We can’t see the big picture of our lives the way they can (even if they barely know us at all).
  • Anything else other than we actually know and understand what is happening.

Then they turn our responses to their efforts to help us, into something pathological that we need more help to work through so we will accept what they consider to be help.

And then we just need to be manipulated into doing what they’ve already decided is best for us.  Like usual.  Even if it hurts us.  Even if it harms us.  Even if it is just something we don’t like.  Even if it kills us.  That they are helping, sometimes just that they can feel or look like they are helping, matters more than what their “helping” actually does to us in the real world.

And we are the ones who pay in all kinds of ways.

Mind you, the problem isn’t that they get things wrong.  Everyone gets things wrong.

The problem is that they think their status as professionals makes them always right about things like help.  At least, always more right than people with developmental disabilities.

 

Author:

Hufflepuff. Came from the redwoods, which tell me who I am and where I belong in the world. I relate to objects as if they are alive, but as things with identities and properties all of their own, not as something human-like. Culturally I'm from a California Okie background. Crochet or otherwise create constantly, write poetry and paint when I can. Proud member of the developmental disability self-advocacy movement. I care a lot more about being a human being than I care about what categories I fit into.

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