A Loss of Trust

When people with disabilities are abused, it is most often done by those who provide their care.

Not a pleasant thing to complicate, is it? We like to believe that caregiving is a sort of sacred profession, one that requires altruism and compassion, is seen almost as a vocation. The thought that those who are entrusted with the responsibility for people who are more vulnerable than almost anyone, except children, could misuse that trust, could deliberately harm, makes your insides clench.

I, and many other people with disabilities, receive attendant care in our homes and because of that we are able to live independently in the community, participating on an equal level with those who are able-bodied. In its preamble, the Ontario Human Rights Code talks about it "having as its aim the creation of a climate of understanding and mutual respect for the dignity and worth of each person so that each person feels a part of the community and able to contribute fully to the development and well-being of the community and the Province." In a very basic way, attendant care is a practical expression of that ideal. Independent living - as it is called when you live among the English (i.e., the able-bodied) – means living in a regular building, assistance with daily tasks of living provided by a publicly-funded agency and enables you to participate in and contribute to the community. And most of the time, it does exactly that.

Except. Because there is an exception and it is woven into the interpersonal relationships that is part and parcel of attendant care. Because caregiving of any kind places the person providing the care in a position of power. An attendant decides if I get dressed in the morning, if I eat, if I go to the bathroom. Without them, I don't. This dependence upon someone else's mood and inclination does funny things to your mind - your perception of personal power and determination shifts and you begin to accept things that you quite frankly shouldn't.

When you receive care, whether it's in the hospital or in your own home, you very quickly become familiar with the concept of being "good," accommodating, easy, because when you are, you get better care. It can be as simple as the kind of mood and attitude the caregiver has - do they smile when they say hello, do they engage in minor pleasantries, cooperate with you, what tone of voice do they use or are they surly and monosyllabic. Receiving care from someone who does not engage with you, but mutely performas the required tasks while looking as if a thundercloud has parked itself permanently over their head makes you anxious, makes you worry somewhere deep inside. It activates the niggling fear that if they feel free to act that unprofessionally, is it really that far before the mood is expressed physically?

I've been known to say that caregiving attracts two kinds of people. Some - most even - do the job because they care, because they genuinely want to make life better for people who need the help in order to live the lives. But then there's a second kind, the ones who do it because they're into power and short of the time and energy you need to invest to become a dictator, caregiving is one of the most powerful things you can do.

Not too long ago, Dave posted about new regulations governing the reporting and investigation of abuse against people with intellectual disabilities (go read it - it's nothing short of inspirational). Dave works in this field and is much more knowledgeable and eloquent about it than I am, so I will quote him when he describes these regulations as "a fully thought out strategy to reduce the likelihood of abuse, to increase the likelihood of conviction of abusers and to ultimately make the system safer." One of the especially brilliant parts of this new approach is that suspected abuse must be reported directly to the police, instead of winding its way through an internal investigation. So much can go wrong in those kinds of investigations within an agency. People who work in the field are not trained in how to conduct a proper investigation, which means not only can they inadvertently introduce a bias, not find out what's really happened, but it also allows time for the guilty to hide the evidence or intimidate the victim and/or other staff. Often, nothing really happens - at most, the offending staff may be transferred and very seldom fired.

Dave sent me to the website, told me to click on the videos (# 6 and 7 in particular) and I did. I watched and listened as these videos described why the new rules have been put in effect. Described the signs and symptoms of abuse, the interpersonal dynamics of dependence and caregiving and as I watched, I could feel the tears well up. Because I recognized them. These dynamics, these feelings and behaviors are universal among those of us who receive care and I recognized them both as seen in others, but also as experienced within myself. I was overjoyed that people with intellectual disabilities are finally protected in a way that much more likely to weed out the bad apples and stop the power games and abuse of those who are vulnerable. And I cried, not just out of recognition, but also from a sense of despair that people like me are not protected in the same way.

People with physical disabilities fall between the cracks in a number ways. Attendant care is not regulated in Ontario the way doctors, nurses and occupational therapists are. Furthermore, if you're older than 18 or younger than 65, there are no programs in place that will protect you from abuse and no commercials on TV to alert the public to the signs of what happens when trust is broken. And on one hand, you can argue that this treats people with physical disabilities exactly the way everyone else is treated and is therefore good thing,, but ignores the reality. Which is when you approach integrating people with varying levels of ability into the community at large, to do so in an equitable way requires putting certain measures in place to get to a level playing field. An example of these measures is accessible design which is supported in theory by the Ontario Human Rights Code and in practice by the Ontario Building Code which sets out architectural specifications for door width, ramps, automatic door buttons, elevators, etc. Attendant care is another such measure, but there is no practical or meaningful quality assurance and that leaves the recipient of this kind of service not just more vulnerable to abuse, but also makes it more likely that abuse will go unpunished.

Of course there are factors complicating the implementation of such quality assurance, aspects of the philosophy of independent living that would require tinkering and adjusting of measures to protect recipients of service, but in the long run, something has to change. Is it for those of us who receive attendant care to wrest control of the service away from those who are currently holding it and what is required for us to receive the level of skill and empowerment to do so? Is it the implementation of regulations governing reports of abuse and what would it take for that to happen? Or, probably more likely, is it a combination of the two?

A shift has to happen. As shift that will make us, our rights visible. As shift that will make it clear that such breaches of trust will not be tolerated.


Anonymous said…
I am so very grateful that my disabilities do not require outside assistance.  I would struggle without the support of my OH, but when he is on holiday the only bad thing that happens is I suffer more pain, get more tired and the laundry mounts up.

There is so little help in the UK for people who are disabled, but not quite disabled enough to need attendant care.  One of the criteria for getting financial aid to support independent living is "are you able to cook yourself a meal".  The answer to that according to their criteria is "yes I can".  However their criteria is can you cook yourself a meal if you have all the ingredients in front of you.  It doesn't take into account that I can't lift a pan of boiling water in order to drain it, it doesn't take into account that I can't get the shopping, or put it all away, or get tired from getting all the ingredients together.  Nor does it take into account that sitting on my perching stool for 30 mins whille I cook something will leave me flat on my back for the whole day recovering.  But I am not disabled enough to get financial aid.  If I didn't have my OH, I would be living in squalor, in agony, would never leave the house and would be living on microwaved meals.  But I wouldn't get any help because I am not disabled enough.

It sounds like the criteria in Canada for getting the legal support to create a nurturing and safe environment for people with physical disabilities are equally backward.  It appears you just are not disabled enough to warrant special protection.
Anonymous said…
I've lived through this vicariously with my late friend Lynda, who had severe post-polio syndrome, so I have some small idea. I remember the sense of horror when she let spill just a little of what one caretaker had been like, and it was clearly very hard for her to rat the person out and get them out of there; she knew the agency would scramble to find anyone to replace them. But they had to. She was lucky in that she had a whole churchful of people to watch her back with a few of them appointed to particularly keep tabs on her situation.

And then she had one caretalker who would herself eat nothing but ice cream. Ever. Ooookaaaayyyy...

I hope you're safe!
Anonymous said…
Oh, sorry that was me, AlisonH on that second comment, not sure what's up with Echo.

--AlisonH at spindyeknit.com
Laurie said…
Youare so smart.
Marie said…
If you ever have a problem with your caretaker(s), just let me know and I will send large unpleasant men with muscles to "speak with them."  Just kidding, but that's what I feel like doing when I see some person, disabled or not, or animal being abused.