Tuesday, May 09, 2017


He he was, slowly, cutting a piece of his pizza. It was clear that while he would be unable to eat it by picking it up with his hands, he would be able to do so by cutting it up into pieces and spearing those pieces with his fork and then taking the food to his mouth. He was with a staff who had turned her back to him to text a message or otherwise use her cell phone, her thumbs flew as she did what she did. She then turned to see that he had started his meal and a look of, this is hard to believe, annoyance crossed her face.

"I told you to just wait a moment." she said. I couldn't hear his answer as he spoke very softly. "Well, never mind," she said and took the knife and fork from him against his small protest, and began to cut up his food. "Don't fuss," she said, "This will make it much easier for you to get at the pizza faster." Then she laughed. He didn't. He looked deflated.

When a piece of pizza went astray, he picked his napkin up to wipe his mouth. She saw this and took it from him, she didn't say anything this time, and neither did he, but he hung on to the napkin and it ripped. She grabbed another one and went for his mouth. She had a firm, 'I'm helping you' look on her face. Again he looked defeated.

She hovered over him.

She took from him what belonged to him.

A kind of theft of his independence and his self esteem.

We've all heard about helicopter parents who hover over their children, who do for them what belongs to them, who try so hard to be there at every moment that initiative and skills are slowly smothered. It doesn't matter how soft the pillow that takes breath from one's sense of self, it only matters that it kills.

I have no doubt that the staff was trying her best to do her best. I have no doubt that her intention was to give to him what he needed. The only problem is it was she thought he needed. 

In a brief email exchange yesterday with someone we were talking about this and I stated that the goal in service was to "respect the disability while not disrespecting the ability."

She saw his disability but she did not see his capability, she did not give him room to grow, to use what he had.

I worked very hard to learn how to get out the door of my apartment building without assistance. It takes both strength and skill, I'm proud that I don't need anyone's help with this. I also know that I need to keep doing it to be able to keep doing it. When away for a week or two working, I always have to try a couple of times to get it right. It really is a case of practice makes perfect.

My big problem is that people always want to help me. Yesterday when I was waiting for Joe to come with the car the lobby had 4 people in it. I saw Joe pull up and headed for the door, 4 people saw this and they all began to stand up. I said, "The best way to help me is to not help me." Three sat done and one kept coming. "I need to do this to be able to do this," I said insistently and the helper reluctantly returned to his seat.

I made my way out.

That young man eating the pizza, he protested her interference with his independence twice. He sill has a spark in him.

I hope she puts the pillow down and realizes her job isn't to snuff out that spark but to fan it until it bursts into flame.


Unknown said...

am I meeting my own needs, or my patient/client's needs? such a hard question to ask ourselves, but so essential...not just for professional carers but for anyone in a relationship of any kind...are my words/actions arising from a place of respect or of a need to make myself feel superior, or helpful (even when that is not what the person is asking for).

thanks for the eloquent reminder Dave, I am realizing that I have more work to do in this area...


Liz Miller said...

Is there anyway to find out what organization she was with and offer to do a training for them? (not that you need more on your plate!)

Unknown said...

As both a parent of a young man with a physical disability, and as a deafblind intervenor, I am shocked and horrified that this woman had such blatant disrespect for the gentleman she was with. Whether she was a paid caregiver, or a relative, or a volunteer...whatever she was, she displayed blatant disrespect that should NEVER be tolerated. Long before I was taught the Deafblind Intervenor motto of "Do with, not for", I believed that everyone, regardless or physical ability, I.Q., or mental health status, is worthy of being treated with dignity and respect and has the right to self-determination and should be provided every opportunity to do for themselves or, if unable to do so, be heard with regard to what they want or don't want in terms of assistance.