Monday, February 03, 2014


I acknowledge right off the bat that I'm going to sound like a petty minded, ungrateful and perhaps even bitter, man. Even so, I am committed to write accurately about my experience as a man with a disability and therefore I'm going to go ahead.

Yesterday when I got home to the apartment, riding over really icy sidewalks all the way, I was alone. Joe had popped into a small local grocer to pick up a couple of tomatoes and we'd agreed to meet back at the apartment. There was no one around so I went into the manoeuvres that are required for me to get both doors open and get myself through all at the same time. I learned to do this soon after I started using the chair, it was one of my first real accomplishments as someone new to being in the world on wheels.

A few moments later I was in.

The security guard who sits at the concierge desk was 'on patrol' so that meant that I was to let myself in. This took me, I'm embarrassed to say, almost four years to figure out. I have to use a key, but the door pulls open on the same side as my controls, I can't open the door and drive through at the same time. But chance and circumstance had me, one day, holding the door open for a young couple moving in. I realized then that I can pull the door open with my left hand, then still holding on, I can simply turn the chair backwards and back in. Voila! I was in.

And that's what I did. It worked like a charm and I was in, warm and comfy, waiting for Joe to get back in. I was actually able to open the door for him when he got there. A nice change.

Here's where I'm going to sound petty. I was thrilled. Just thrilled that there was no one around to help me. People are often very kind and rush to get the doors for me. I appreciate that, I do. I really do. Let me emphasize that again, I do appreciate people's willingness to help. I've learned, over time, to accept the help and say thank you - and even mean it. But, sometimes, just sometimes, I'd like to do what I can do without the burden of being helped to do something I don't need help with. I know it takes me longer, I know I do it in a complicated manner, but I can still do it. I sat in the lobby waiting freed of the weight of gratitude.

When this happens I am always reminded of, very early on in my career, helping a young woman with a disability to do something that she could do herself. She stood her ground and said, "You aren't helping! You are in my way!!" I was startled at first and later when recounting this with a co-worker, I was told that she could be "rude." I said then, and think now, that she wasn't rude at all. I think she'd learned to assert herself in such a way that allowed her voice to be heard. Over time, people stopped helping her do what she could do herself and, magically, her rudeness disappeared.

Because my relationship with those who jump into help is one of stranger to stranger, not staff to resident, I've not gone the rude route. But I understand her frustration, now, more than I did then. You work hard to get skills, you want to use them. And when you need help, you ask.

Again, I am appreciative of people's willingness to help me with the door. If there had been someone there yesterday who helped me, I'd have said 'thank you' and I'd have meant it.

But sometimes.

Just sometimes.

It's nice to have only myself to thank.


liebjabberings said...

'Me do it' is one of the things babies and toddlers fight hard for - and mom or dad clean up the resulting mess.

And then the little ones learn to do it better, and grow up to be confident adults.

It is built into the survival of the species, taking care of ourselves.

Why should you be any different?

Life is a series of tasks to learn, battles to win. Just because we fail on one front doesn't mean we won't keep trying, sometimes long past the point where it makes sense - sometimes long enough to figure out how to make a task doable.

BTW, if your building were truly accessible, you wouldn't have had to figure out how to open the door and get in.


Mary said...

Also - as a general rule - doors and other inanimate objects are so much more predictable than people.

Particularly if it's a familiar door, managing it myself means not having to second-guess what is going on in another person's head.

Some doors of my acquaintance - like bathroom doors with a handrail on them - it's actually easier if no one holds it, because then I can propel myself in using the weight of the door itself and swing it shut behind me in one smooth movement.

Laura said...

Not petty at all I feel that way often

Anonymous said...

One of the things that I hate the most is when people I don't know run up to "help" with something that I don't need help. It's probably a little unreasonable that it upsets me this much, but they don't ever, ever ask if I'd like help.

And no, I can do it just fine. It's easier if you let me do it by myself.

Sam Connor said...


My chair comes apart, and squeezes neatly into a little space in the back of my car. It's a pain in the neck to do and my shoulders aren't really up to the disassemble any more.

But it is so, so much easier than accepting the helping hand and saying 'no, turn it this, that...upside put the wheel in this way...' - when a well meaning person comes to assist, I duck my head and dread it. The weight of gratitude comes with an extra ten minutes of excruciating impatience and usually a delayed meeting.

It's so much fun.

B. said...

Yup, that's familiar, thanks. One of mine is when I found a way to pick up a large plastic pop bottle off the floor (involved a plastic shopping bag, rolling, cane hooking.. I felt amazing.)

Receiving 'help' can be very tiring. In a tired voice I often say "they meant well."

Anonymous said...

I'm guessing you're going to say that it depends on the situation and the person and all - which it probably does. But can you (or any of your readers) provide any general guidelines to follow regarding when to offer assistance?

I'm not terribly outgoing, and particularly with strangers, I'm don't generally offer assistance unless asked. But after a previous post of yours, I resolved to try to take more initiative, since I didn't want to put people in the position of having to ask for help or having to struggle unnecessarily because they didn't feel comfortable bothering me about it.

But now I'm leaning in the other direction. Perhaps the better response is to simply walk by and not pay any particular attention to them (my natural response), assuming that if they want help, they'll ask.

Any clarification? I feel like I've come full-circle on this.

Utter Randomness said...

Anonymous: there's one simple rule, if you think someone (anyone, not just folk with disabilities) might need help, ask and listen to their answer.

Anonymous said...

Everyone likes to problem-solve successfully. It makes us feel competent, resourceful, and clever!


Anonymous said...

Thank you, Random, for taking the time to respond to my question.

Perhaps I need to be clearer that I was referring to the psychological or emotional aspect of giving/receiving assistance - the power dynamic involved. I don't know if this is disability-related at all. I was responding to Dave's comment that:

"Again, I am appreciative of people's willingness to help me with the door. If there had been someone there yesterday who helped me, I'd have said 'thank you' and I'd have meant it....But sometimes. Just sometimes. It's nice to have only myself to thank."

So I guess the dilemma I'm facing is how to know when that "sometimes" is. I'm wondering if there's any way of knowing when the convenience of accepting assistance outweighs the discomfort of feeling indebted or disempowered. By even offering help, I'd be placing myself in a position of power - even if it's unintentional or subconscious. It's that power imbalance that I'm struggling with.

This is particularly difficult with strangers, where there isn't the normal give and take of ordinary relationships.


Andrea S. said...

I think the real key is to OFFER assistance, and make sure that your offer is clearly just that -- an offer. Not something that you're hell bent on forcing down their throats whether they want it or not!


1. OFFER help.

2. LISTEN TO THE ANSWER. If they answer with some variant of "Thanks, but I got it", then you know that "sometimes" is now. So this is when you leave them to it.

It generally isn't a bad thing to offer help. And can even be helpful for some individuals who might have more trouble than others asking for help (for example, some people may have had past experiences where others reacted to requests for help with hostility or other negative reactions). It usually only becomes a problem when would-be helpers try to over-insist on helping or literally, physically forcing their help on disabled people. And it doesn't sound like you're at risk of doing that!

Mary said...

Hi Kate

I think I see where you're going with this.

I can't speak for everyone. But, I personally will not feel offended by strangers ignoring me while I calmly and quietly do stuff for myself, just like they'd ignore every other person going in or out of a store, or picking up their drinks in a coffee shop. (And, especially, sorry to bring this up, but I would pay extra to be ignored when I'm going to the bathroom!)

It's safe to assume that, in their context as another fully realised human being living in the world, the occasion you witness is not the first or last time that the disabled person you see is dealing with a door or a tray of drinks. We'll either have a technique, or be trying to develop/perfect a technique. If we need help, we almost certainly will have some method of asking for it.

Anonymous said...

I don't think you sound petty minded or ungrateful or bitter.
I hear power and liberation.

Anonymous said...

Thank you, Andrea and Mary.


Amanda Forest Vivian said...

I work as a PA for a severely disabled young woman who can push elevator buttons and push the wheelchair button to open doors (sometimes she needs physical prompting to do this, sometimes not). This is one of the only things she can do to help herself get around when she's not walking, so it seems good for her to be able to do it right? WRONG. People are always opening the door or pushing the button for her even if I say things to let them know that SHE is going to push the button. It's so annoying because there is no way to tell people not to do this without being seen as very rude.