Who’s On Board??

by Rosemary Gray-Snelgrove

Last week I lamented the absence of enough care offered by the community (the arm of which can  sometimes be government) for those who are desperate for it: those with various forms of mental disability or difference, as I prefer to think of autism.

A note about autism.

I include autism as a disability because I want to join the voices calling for our awareness and support in trying to meet the needs of families and individuals struggling with the condition.  By and large, people whose brains function differently, for whatever reasons, are often invisible within the community because they can mask the reality or they mostly stay indoors: their behaviour is too unpredictable and communication with others is too difficult.  Interaction between an autistic person and the community at large is generally avoided – by both.  Once a person acts out, then she is shunned and removed : too dangerous.  .

Some identified as autistic are like Miles (described in the Globe and Mail article Sept. 23 and discussed here last week) who becomes physically violent and dangerous to himself and his parents.  Having become too old for the government care provided, he and his parents need a long-term solution – a safe place to live where he can find treatment and care.  Multiply this person by hundreds  – and this doesn’t touch on those with brain injury and mental illness.  One estimate of those waiting for long-term residential care is 6,000 in Ontario.

Some named as autistic display considerable brilliance in areas of knowledge or creativity they have concentrated on, but they are hindered by a poor capacity to communicate with unfamiliar people or to function in the usual learning formats .  One day we’ll help unlock some of that brilliance, when both sides of the communication block have the will and the skill.

A link to homelessness

A study done by St. Michael’s Hospital in Toronto found that of 904 interviewees in homeless shelters, 53% had sustained a traumatic brain injury.  The rate among the general population is 8.5% (Tabitha Southy , Globe & Mail, Oct 6, 2012, study conducted by the Centre of Research on Inner City Health).

This is a stunning fact to me – though on second thought I’m not surprised by it.  The part that brain trauma plays — in helping a person slide into homelessness, and in the added traumatic impact of becoming homeless – has often shown itself as one gets to know individuals using shelters.

What’s needed so people with mental struggles can live decently

  1. A place to live
  2. Skillful treatment
  3. Continuum  of Support

The above largely speak for themselves.   About No.3;  someone – a social worker, family member, doctor, clergy person, friend – has to be available over time as a stable source of friendliness, interest, caring.  Having only a series of offices and ‘teams’ to report to becomes alienating over time for someone caught in the loneliness of a confused mind.

There also has to be a broad base of public understanding.  I could spit when I hear someone say, of a mentally ill person, “He should just pull himself together”.  We all have to understand more about the mentally ill because we walk among them and each of us may be touched at any time.  Walking down Yonge Street near St. Clair, a woman approaching me suddenly threw a cup of hot coffee at me, swearing, glowering, but keeping on walking.  The unexpectedness of it and the anger in her eyes were disturbing.   To be able to just let it go, I had to keep reminding myself that it wasn’t personal (of course not! ).   I had to remember she was one of many off-balance people walking our streets and at least she let me see her.  She likely had neither a good place to live, nor skillful treatment, nor a continuum of support.

In the New Housing Climate

The cost of good care is a factor discouraging the development of Housing.  In her Comment last week, Kay Houghton described the efforts of a group that managed to get some housing built for their adult disabled children needing supportive housing.  The initiative of parents was enough, in the 70’s, plus long hard persistent work, to get important housing built.  Programs allowing for such development have largely been withdrawn by the federal and provincial governments but Kay’s experience points to a positive factor:  could parents provide some of the care needed in a home for mentally-different adults?  It could be win-win if participating families could provide a-day-a-week of care, and be part of the Board and Management.   But first there has to be a location.  Please read Joy Connolly’s  Opening The Window blog to learn about social housing at this time.

Why, If We Care, We Have to Find a Way to Lend Support

After the article about Miles appeared, there were many Comments printed and it was helpful to see the degree of hostility and support the story  generated.  The following few, of over 100, caught my eye:

Scientific research could find the cause and the cure. Let’s work on long term solutions for brain diseases. We care for those with no-fault chronic brains diseases, but why not also fund scientific brain research to find the cures?

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Why doesn’t the kid live with one of the parents? Would it not be cheaper to pay for an in home care giver during the day, and have the child’s parent(s) take care of the kid at night and on weekends? Probably would be cheaper than $400 a day. Why are they ‘no longer able to care for him’? So you had a kid, then got tired of dealing with him, so now your dumping him on society?

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Some commenting here feel that it should be a matter of personal responsibility for people who decide to have children, to deal with the consequences of that decision. Like some parents save for their kids education, maybe they should have put aside money for this kind of eventuality.

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The vision of our country is to be compassionate and care for the vulnerable. Having a son with autism I know well this is barely a realty we have in Canada. So – should we just shoot him in the head and have it done then? Or perhaps you support great work camps to get value from the vulnerable.

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Have him wait in line like the rest of the disabled and get his share fair like the rest of them.

And so the discussion continued, for pages.

So first – awareness and compassion, and from there, maybe some creative thinking…

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1 Comment

Filed under A Bigger Circle, Rosemary's entries, Uncategorized

One response to “Who’s On Board??

  1. Linda

    If the caring for one is the destruction of two, how does one choose? With extraordinary difficulty, but choose one must.

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