Sunday, February 02, 2014


We were in the grocery store getting stuff to make radish stew. It's been cold out and we decided that a nice stew in the slow cooker was a terrific idea. We'd gone early, had breakfast in the store, then set about reviewing the grocery list and assigning tasks. The store is huge and I'm usually given the task of going to the north west corner of the store where they keep some of the frozen 'nature' stuff. We agreed to meet in the produce section after having collected some of the other things on the list.

When I arrived I noticed Joe looking completely frustrated. I rolled up to him and he glanced over at an elderly man and a middle aged woman then said, "I'm having trouble keeping my mouth shut." Over the next few minutes sharing space with the two people he'd indicated to me I came to understand exactly what he meant. So did everyone else in the area.

He used a walker, she was pushing the cart. It became clear that she was a 'helper' and that she was, as Norm and Emma have written about, hell bent on helping. She lectured, that's right, lectured him on everything. He chose this and she thought he should buy that. He stuck to his guns and never capitulated to her constant 'I know better' attitude, but it was clearly wearing. At one point she was telling him that he should use more herbs in his cooking and that the herbs they had in the store were on sale. "I neither want nor need herbs," he said, exasperated but not yet angry. She, however, was growing angry at what she seemed to think was his purposeful non-compliance with her advice.

I don't know how she couldn't have seen the looks on the faces around her. But like many paid care providers, she seemed to think she was invisible in public. I've stressed, often, in my trainings that we are supervised, whenever we are in public, by every single person who sees us. We educate people about how to speak to and interact with those in our care. This woman was a dreadful example of what it is to be in the care providing profession. And, of course, an even worse example of how to speak to and be with someone with a disability.

Like Joe, I had difficulty keeping my mouth shut.

But, I'm glad I did.

Just before we left I heard him say to her, quite gently, "I appreciate you helping me with shopping but let's be clear, you are paid to help me get what I want and what I need. Right now you are at work, I am your employer not your child, I need your help, I don't need your direction."

I felt like cheering.

He may have needed her help but he didn't need ours. She said something to him, quite quietly, something that no one but him heard. He just smiled at her and said, "let's go over and get some bread."


Mary said...

That's simultaneously an ugly thing that makes me appreciate my PA all the more, and a wonderful thing that the employer was able to handle it with such class. Clearly and firmly underlining the problem and what needed to change, then moving on with a smile. Who wouldn't want a boss like that!

I feel it is one of the biggest positives and also biggest problems of systems that allow disabled people to employ our own staff directly. Being able to say "no, I'm the boss, I'm in charge, and I say I'm doing this, and your job is to help me do it," is very empowering and important. But, it is difficult, feeling flung in at the deep end of people management when society still has that patronising skew that can't quite fathom that people like you are allowed to be in charge of your own life, let alone being allowed to instruct others.

Anonymous said...

All to often in the helping field "supporting" individual gets confused with "controlling" an individual. Service Plans get developed around what the support person sees as an issue (which can be and is very subjective), rather than what the person who is accessing the service would like support in developing/enhancing or extinguishing.
This is a great reminder for support staff, I'll be sharing this! Thanks, Dave :)

Tamara said...

Shawen is only 17. We have a young woman who comes over after her university classes who hangs out with him while I'm working three afternoons a week. We are working on him being responsible for certain tasks around the house and doing his homework, of course.

He routinely fires her when he doesn't want to do what she asks him to do. I wonder how that will translate in this type of situation when he's an adult ...

Anonymous said...

Wow, that gentleman spoke some powerful words. What a great lesson for his employee, and in turn us. Thanks for sharing.

Mary said...

Tamara - I think if part of this young woman's job is asking Shawen to do things, and those things are your goals for him rather than his choices for himself... surely that makes her your employee rather than his?

If he's being told that he's the employer, and that he's in charge of himself and his staff - and then he's "routinely" experiencing a situation where he's clearly not in charge, being asked by his staff to do something he doesn't feel like doing - and then he's railing against being told what to do by "firing" the person who he's supposedly in charge of - and then having his decision overruled - thus proving that he's NOT in charge of hiring and firing employees and that he is expected to do what his staff tell him rather than being in charge of his own time - that's got to be confusing, for him and the employee.

Jayne wales said...

My father is 85 and he is able to state very clearly what my mother and he want in terms of attitude, care and support. I know some days though when he is down or tired someone taking the load that day is appreciated. However they have excellent Carers that know how to support them with dignity.

jwg said...

And now to the most important part of this post.What is radish stew and how do you make it?

Leah said...

I have worked in the disability field for 5 years now, and I have to agree with Heidi. I have seen numerous paid caregivers who end up controlling individuals, instead of supporting them. We need to advocate for these individuals, so they can live the life that THEY want to live. Not the life that others want or think would be best. It needs to be a person-centered plan, where the hopes, dreams and goals of the individual are the focus. If all caregivers were focused on the individual’s goals and preferences, many individuals with disabilities in this world would have a higher quality of life.

Jessica said...

I enjoyed reading your post. I am currently enrolled in the DSW program, and i am learning a lot about advocacy. There are certain times you need to advocate for someone and others when they can advocate for themselves. I am glad you didn't step in (even though your intentions were good). He was perfectly capable of self advocating. I bet you that worker didn't try to control him after that comment he made. Good for him. And as for the worker. I am trying to understand why she did what she did, and where she was coming from. We are their to support not control. I really hope she learns from this, and find better ways to support these individuals in her care. Not all people can self advocate, or there may not be someone around to advocate for them. Thanks for posting.