Friday, February 15, 2019

Autistic Children and Toilets: Misunderstanding the Difficulties

A disorientating digitally altered photo  looking down into an empty toilet cubicle
Photo © Ann Memmott
[image: A disorientating digitally altered photo 
looking down into an empty toilet cubicle.]

Ann Memmott

Many autistic children sense the world very differently from how many parents and teachers expect.

Above, an example of how an autistic child may see a room with a toilet and hand basin in it. A tiled wall, a patterned vinyl floor surface. Would you put your feet on that floor? Could you work out what it was? Could you even reliably find the toilet?

Now let's add in the 'smellscape.' Perhaps air fresheners. Toilet cleaners. Hand soaps. Wee. Poo.

Then, let's add in the soundscape. Noisy pipes. The jet-engine-like flush. The deafening smash of wee or poo hitting the water, and the terrifying prospect of freezing water splashing up.

Let's then add in the elements of freezing cold toilet seat, ice cold taps or boiling hot taps, the ice-cold metal of the toilet handle, the taps. The searing rough surface of the hand towel, or the further deafening roar of a hand drying unit perhaps. Then, of course, the pain of dragging clothing down in order to use the toilet.…coping with the complexities of the toilet paper and what to do with it, where to put it. Dragging clothing back up again, like someone using sandpaper against your skin.

Toileting can be the most terrifying experience imaginable for a child whose experience of the world is turned up to 'max.'

For others, each noise and smell, texture and feeling is a fascination and a puzzle which needs exploring, and they may seek out those experiences over and over, trying desperately to make sense of them.

Some may experience difficulties with balance and co-ordination, or with internal signaling to say they need a loo until it's too late. Or with the ability to point or signal that they want the loo.

To their credit, many autistic children endure all of this and actually do use the loo, politely, over and over again, and continue to do so for life. No-one questions whether it's hell, or whether we could design such spaces in ways less exhausting to use. So, let us bear in mind that most autistic children do manage to cope with this ridiculous scenario.

But how easy it is for some adults to misunderstand why an autistic child may avoid using a toilet.  Some children are so desperately afraid of these spaces that they will only wee or poo in a quiet, safe corner. Often on soft material that disguises the noise.

Yet some adults still say, "They're just animals—they just don't care—this is deliberate challenging behaviour—we must find ways to force them…" We even have playwrights writing a horrible play which portrays autistic children as animals, using this theme and dehumanising puppets.

Oh my. No.

Always, always presume competence. Presume that the child wants to learn. Always, always show respect and caring. Take good advice from autistic advisers and our allies, who are experienced and expert. Many are parents, many have vivid memories of their own of the challenges of such spaces.

If you are designing such a space, take good advice on that design. Think about minimising the pain and the disorientation.

Instead of assuming that, since it's OK for you, it must be OK for an autistic child…think differently. Because the solution isn't the child being forced into that hellish toileting space. Instead, we should be working with the child to find answers to each part of their toileting nightmare. Thinking about making the visual experience understandable. Minimising the smells. Minimising the noise. Using soft towels, soft paper. Using clothing that doesn't cause terrible pain when it is pulled up or down.

Work together. Learn from one another.

Thank you for listening.

Monday, February 11, 2019

The Meaning of Self-Advocacy

Black and white photo of a person with long dark hair holding their arms straight out towards the camera, with palms facing outward protectively.
Image © Gioia de Antoniis  | Flickr / Creative Commons
[image: Black and white photo of a person with long dark hair holding their arms
straight out towards the camera, with palms facing outward protectively.]

Mel Baggs

Too often people define self-advocacy in narrow terms. They define it in terms of formal groups like People First or Autism Network International. They define it in terms of the ability to use standard language in a specific set of ways. They define it in terms of a specific method of going through the legal system, or other usual channels, to get specific kinds of things done. These are all valid kinds of self-advocacy, but they set people up to believe that only certain kinds of people could ever become self-advocates.

When one inmate in an institution fights back against the staff in defense of another inmate who is being brutalized, this is self-advocacy. I have only seen this happen once. She was brave and heroic in the genuine senses of the words, and she paid the price for trying to protect me.

When an autistic teen without a standard means of expressive communication suddenly sits down and refuses to do something he's done day after day, this is self-advocacy. When his initial peaceful methods are ignored in favor of restraining him and violently shoving him into a car so that staff can meet their schedules rather than listen to him, his decision to bite the driver is self-advocacy. I was there in the car with him.

When an autistic person who has been told both overtly and otherwise that she has no future and no personhood reacts by attempting in any way possible to attack the place in which she's been imprisoned and the people who keep her there, this is self-advocacy. That was me and too many others I knew.

When inmates of institutions (both traditional and those that masquerade as community), including those who are said to have no communication, devise covert means of maintaining communication and friendship in spite of staff's attempts to stamp it out, this is self-advocacy.

When people generally said to be incapable of communication find ways of making clear what they do and don't want through means other than words, this is self-advocacy.

When inmates and 'clients' devise both small and big ways of sabotaging staff's attempts to control our lives, this is self-advocacy.

In the book First Contact, Dave Hingsburger describes how people with significant developmental disabilities, normally believed to be incapable of self-advocacy, can and do engage in it:
Helen is her own self-advocate in that her "self" "advocates" that we adapt the world for how she experiences it. This is self advocacy at the grandest level. Why? Because it is immediately apparent that if Helen's personhood can liberate her—our understanding of the personhood of people with disabilities should do the same. Her statement of joy, of self awareness, shows that people who think that she would be better off dead—are simply bigots who choose not to know her. Helen is a radical person. Her message is about radical acceptance. Her life is radically her own. For those labeled "profoundly retarded," emphasize the word "profound."1
Then there's the question of things that get called self-advocacy, but aren't.

When a non-disabled person gets full of ideas about what disabled people should be saying and thinking about our lives, and holds us lockstep in his control while pretending to teach us all these revolutionary ideas, that is not self-advocacy. Nor is it self-advocacy when someone is constantly telling us that our existing methods of advocating for ourselves are wrong, that we need to ask permission to have a voice, and that self-advocacy can only be accomplished once we learn to behave and go through "appropriate" channels. Or when an institution sets up a "self-advocacy group" that it keeps busy doing meaningless work to siphon off the frustrations of inmates and prove to others that they're really about "empowerment." These things often get passed off as self-advocacy, though. Real self-advocacy involves respect and listening to us.

When a disabled person decides to disenfranchise entire categories of disabled people on the basis that they're not as worthy or capable of self-advocacy as her kind of disabled people, that is not self-advocacy. When people run around saying "I can make decisions of my own, but 'retarded' people shouldn't," "People with developmental disabilities shouldn't live in institutions, but can you please tell me how to lock up my crazy brother?" or even "It's perfectly natural for people like me to hate ourselves, that's just how we are..." that's more like oppression than self-advocacy.

There's also a common practice of getting a bunch of disabled people together for a recreation program and calling it a self-advocacy activity. Real self-advocacy involves getting the tools for real power—not bite-sized pieces of power, but the real thing—in the hands of disabled people. Too often people in these 'programs' are punished as showing inappropriate behavior if we engage in real self-advocacy.

Self-advocacy doesn't always look good on paper. It doesn't always stay within the sensibilities of people who want everything neat, orderly, pretty, and civil. People who declare a certain category of person to be uniformly incapable of self-advocacy are usually the same people who view that category of people as people who must be controlled rather than listened to. Self-advocacy doesn't mean staff get to pat us on the head, use the right buzzwords, tell us what wonderful little self-advocates we are, and then chastise us or put us on a behavior program when we get angry at them about their controlling behavior.

Self-advocacy is fundamentally about true equality, respect, and power, and about recognizing and changing the current imbalances in all of those things. Whether it is going through the legal system to close an institution, fighting back physically against intolerable surroundings, talking back to staff, sabotaging the power of staff over the lives of disabled people, being listened to when we communicate in non-standard ways, learning that it's okay to have a voice and make decisions, or passively resisting the dominance of others over our lives, real self-advocacy will always upset the status quo in some way.

No matter how legal and proper it is, self-advocacy won't be comfortable and cushioned. It will not give the people who are used to having power over us a warm fuzzy feeling of helping us, nor will their viewpoints on what we should be doing be able to dominate us and speak through us. They will not be able to pretend away the power inequalities between us and live in fairyland where everyone's the same and that's what counts. It will frighten them and force them to examine themselves. This will be true not only for non-disabled people, but to disabled people who are used to feeling superior to other kinds of disabled people.

I was once told by a surprisingly renowned "parent-advocate" that I only have a voice because Gunnar Dybwad gave me one, and that I should sit back and let parents and professionals do all the work towards closing institutions in my state. I beg to differ. Self-advocacy was not born with Gunnar Dybwad, no matter how much of an ally he was. It was born the first time a suspected changeling tried to run away before anyone could kill him. And the first time an inmate of an institution resisted staff power. The first time someone without a standard system of communication devised one of her own and tried to communicate basic things to other people.

Self-advocacy has been and is still often labeled intransigence, non-compliance, treatment resistance, lack of motivation, behavior issues, violence, manipulation, game-playing, attention-seeking, bad attitude, bad influence, babbling nonsense, self-injurious behavior, inappropriate behavior, disrespect, disruption of the milieu, catatonic behavior, social withdrawal, delusions, septal rage syndrome, and even seizures or reflex activity. Self-advocates have been tortured, intimidated, locked up, separated from our friends and lovers, and killed for our actions since before any organized movements existed. To say that the parent-advocacy movement or any other group of people created our voices is arrogant and shows real disrespect for the price many of us have paid for using our voices. We have always had these voices, in many forms. It is others who have shut us out, shut us up, and refused to listen.

1First Contact, Charting Inner Space: Thoughts about establishing contact with people who have significant developmental disabilities, by Dave Hingsburger. This book is available from Diverse City Press. It talks extensively about how to get to know and listen to people without controlling and projecting your values all over them, and about the roles all people can play in the self-advocacy movement.


Originally published at