Wednesday, March 15, 2017

How and How Come

How come whenever I see three people together, two walking and one pushing the wheelchair, I never see the person in the wheelchair being anywhere but in front of the pusher and the other walker beside the pusher? I never see the 'non-pusher' walking beside the person in the wheelchair.

How come when I see a couple of staff out with a group of people with intellectual disabilities, I always see the people with disabilities trailing behind the staff, looking as if attached by an invisible tether?

How come when I go to inclusive events people with disabilities aren't really ever actually included, bot other forming islands of isolation around the room?

How are we supposed to expect any kind of success at 'community' when we ourselves model exclusion all the freaking time?

We left his communication board at home.

I know what he always has, I'll just order for him, it will be quicker.

My guys need me to speak up for them.

How are we supposed to expect any kind of success at self advocacy if we constantly get in the way of the every day use of voice?

Here let me help with that.

Just sit back and relax, I'll take care of that for you.

It'd be faster if I just did it.

How are we supposed to encourage full participation in a full life if we simply don't have the patience for people to do things in their own time at their own pace?

Maybe welcome begins with us.

Maybe the community learns disrespect from us.

Maybe we need to pause, every now and then, and think about what we are doing.


Unknown said...

It is our need to be needed - the helpers - and it is much harder to make/hold space for another person to try/struggle/fail......or make their own choices...than it is to 'do for" someone. we fail to see what we are 'dong to' someone when we usurp their right to speak/choose/act by doing it for them or telling them what to do instead of helping them choose what to do....
a reminder to be humble in my day...maybe that will help me from feeling like i have so much to "do'.

Andrea Shettle, MSW said...

I agree with Clairesmum that the "need to be needed" is important for some.

I think the focus on convenience that you point out is another important factor. Some "overly helpful" people see only the time saved, and the "nuisance" saved, and fail to see that trying to take these shortcuts can end up shortchanging disabled people. There have been times when people around me have had discussions on my behalf, resolved certain challenges on my behalf, and decided things on my behalf, because it would "take longer" to have to try and communicate with me as a deaf person, because it would have "complicated" things if they had to keep asking the other person to pause while they take the time to explain to me what is happening, because it was "easier" for them to just do things on their own without involving me.

But when I was younger, this robbed me of opportunities to practice communicating about and resolving challenges on my own--whether a snafu with paperwork, a scheduling issue, or whatever the situation was. Losing the opportunity to practice these skills while a safety net was hovering behind me robbed me of the confidence I needed when I later needed to resolve these things on my own. It may seem to save 10 minutes today if you just do the thing instead of enabling the disabled person to do it. But then the cost will come back to hit the disabled person, both now and later. Losing the opportunity to communicate on my own behalf also usually meant missing out on a lot of important information that was explained to the hearing people speaking on my behalf--but not to me. And yes, they tried to explain the same information to me later. But why shouldn't I have had the right to ask my questions directly to the person who first explained it to them?

Later, as I got older and sufficiently experienced that I already had both the practice and the confidence to handle things on my own even if communication takes longer, taking over would now rob me of the opportunity to decide for myself exactly what strategy I should use to advocate for myself, how to implement that strategy, and when to push a little harder versus pulling back or letting things go. Why should I have to sacrifice this kind of autonomy? Why should I have to sacrifice my right to have the same access to the same information as everyone else? Because, yes, I do happen to value my autonomy and right to be fully informed and included more than I value your "right" to save yourself 10 minutes of time talking (or, if lipreading isn't working, then writing) with me.

ABEhrhardt said...

Then there is the societal expectation that the carer is failing society if she lets the client take her own time ordering at MacDonald's - while the 'society expectation monitor' is made late getting back to the office because of it.

Carers are sensitive to expectations that they are not doing their jobs - so they are happier and society is happier is they JUST expedite matters.

The only one left out of this is the PERSON who is the reason for the carer in the first place! To bad. She doesn't write to congressmen, the newspaper, or most blogs.

Diana said...

And sometimes the staff give the person the opportunity to speak themselves and the person ( dr, nurse etc) just want you to answer because they don't want thier time wasted. 😭

Ron Arnold said...

I find the root of a lot problems in the world lay in the imbalance of expectations / skills to meet expectations. How is anyone supposed to build skills to meet expectations if not given the chance to practice those skills? On the other hand, do the staff have a conflicting set of expectations set on them by their "superiors" or (as Alicia so excellently put it) immediate society? Need to be needed enters it to it as well - because if a person learns the skills so as to make my assistance unnecessary . . . maybe I'm not too hep on folks learning those skills.

Tons of conflict. I think it can be largely avoided if expectations are clear and skill acquisition is clearly the emphasis. So - the good helpers might have to change their paradigm to act more as a social buffer to explain to folks inconvenienced by someone's learning curve that good stuff's happening. Won't stop an occasional asshole from being an asshole - but then dealing with assholes is a skill to acquire too. =)

Unknown said...

The most ironic thing is when carers do something like take over ordering for the client in a cafe 'to save time' and then spent 10mins faffing about their own order or doing time wasting small talk with the cashier. Its ok to take up everyones time when you *don't' have disabilities apparently.

I agree with Alicia too, some support people worry about needing to be seen to be doing their job, but they often forget that their actual job is to only offer the support their client wants,not to take over and do everything for them.