Saturday, February 10, 2018

Lessons Learned

Lessons learned.

There is a fully accepted cultural myth about people with disabilities who live within service systems. That myth shows itself most clearly after an inquest or a newspaper report or a splash on social media about the often violent abuse or the deadly neglect experienced by people with disabilities by the people who are paid to care for them. To be fair, we live in a society that easily 'understands' the murder of a person with a disability by a parent, so society's expectation of care providers isn't a high bar to get over. But there are those situations where the abuse is so bad, the neglect so disgusting that it can't leap over the 'maybe better dead' bump in the road.

Then there is the faux outrage of the public. People say things like, those people who did that should be killed, or who could do that to a disabled child. "Child" is often used even if the reports are about adults in care. These are exactly the same words that people use about a puppy being beaten, or a cat being starved.  It's laudable outrage, but it's outrage waiting to move on.

People with disabilities within the system however, do not. They wait, those who have been given the opportunity to be informed, to find out what a report says. A bunch of people get together and craft written responses. There are the public relations kind of people who write something for the agency that housed, fed, and watered the abuse. There are the people who craft together words to appear in a report, each tacking a different angle from a different respect, people who are able to turn a rampaging elephant into a slightly pissed off bunny.

And then they all say it.

"There are lessons to be learned here."

"We have to pay attention to the lessons learned."

The public buys it. The media buys it. Lessons have been learned - good we're done.

The myth is that we as people with disabilities are so exceptional, so different, so unimaginable in our needs that it takes real, deep, thought to craft a system to support us. That our needs are 'special needs' and therefore we need 'special' people to provide for those needs. That our exceptionalities are so exceptional that only exceptional people are gifted with the ability to deal with the ugly realities of who we are.

Look at the public worship of those who assist us. You must be so patient - as if we are very trying people whose needs are burdensome even when paid to provide them. You must be so kind - as if it takes an extra bunch of kindness to spend even a little time with us and our bodies and our faces and our words. This is followed by "I could never do that!" The suggestion is that you with your goodness you go do that but me, keep the grotesques away from me.

The lessons learned? Pablum. That's all pablum. Easy to digest. Easy to find profound.

Provide medical care when necessary.

Provide the basics of life.

Don't slap or beat the shit out of them.

And if you do, please clean it off the floor.

Let me make this clear from this disabled man's point of view: There are no lessons to be learned.




We need the basics. Food and water, shelter, clothing.

We need the basics. Good medical support from the health care system.

We need the basics. Respectful human interactions.

We need the basics. Opportunities to grow and develop.

Sure there are more, lots more. But they are all pretty basic. They aren't exceptional for anyone else so why are they called 'special needs' or 'exceptional needs?'

When will we have an inquest where the lessons learned about about the system and how hierarchy and power breeds violence and neglect. When will we hear about the system and not ourselves. When will the stories be about the dark dank places where we sit in our own feces and how they came to be? How did society allow it? How did management avoid seeing it?

Until then the lessons learned will use our bodies and our regular and ordinary needs as a way of justifying their actions and blaming us the victims simply for being.

Our being caused our abuse.

In a world that lauds our death on screen, in newspaper op eds about parents killing disabled children, in classrooms where children have to decide who to throw out of the boat, this makes sense to them.

This is how they see us.

Be grateful for care because, of course, you don't deserve it.


ABEhrhardt said...

What is needed is to ruthlessly weed out the 'carers' who aren't, when they're hired, and periodically through the entire time they are responsible for other people. And pay the good ones more.

Adjusting the Carburetor on our Edsel? said...

As a parent of an adult with a profound disability, unable to care for himself, who was nearly thirsted to death (literally) by a caregiver. I would suggest that criminal penalties for those in administrative and supervisory positions who fail to recognize, encourage, tolerate or otherwise allow abuse would be a good first step forward. Eventually my son died from a weakened system two years later at 49 years old. Nothing was ever done to the perpetrator or the system that allowed this other than a ridiculous, non-meaningful, system-required "plan of correction." Supervisors go on with their lives. My son dies.

clairesmum said...

I've read this several times..and I am at a loss to a response. Your words are eloquent - and I do what I can to treat disabled people in the ways that I have learned from you are appropriate. I don't use the 'r' word, I don't spend time with people who do think it is ok to ridicule anyone with a visible difference or disability. I work with people who are 70+, with chronic illnesses that lead to functional impairments (similar in many ways to disabilities, if impairments occur at earlier ages) and know the ageist prejudices they face and their own reactions to needing hearing aides or walkers. (often, choosing to isolate from family and community rather than display visible vulnerability) I try to praise good caregivers, teach and encourage mediocre ones, and do what I can to get one who is unfit or marginal away from their power over others. (Sadly, some are promoted, and continue to do harm).
This is in the course of my daily living. It seems inadequate. I don't do public protests and only rarely letter writing campaigns. Other suggestions, Dave?

Jaspreet Kaur said...

I have read many blogs and I learnt many things about disabilities like neglect of client, sexual and physical abuse and lack of support services and so on. Up to certain extend support workers have responsibilities to provide care which help them to live independent in the society. In this field we get chance to meet with different people with different disabilities. we should give freedom to people with disabilities so that they feel free to make decision in their life. Appreciate the client if he perform well. People with disabilities have same rights as a normal human being. We should use appropriate language while communicating with people having disabilities instead to use the word retarded. It is very hurting word for them. I am working with students having behavior problems and having special needs. It gives opportunity to me to observe the typical and atypical behavior at particular age.