You are entering the Independence Zone!

Hello, readers,

I recently started a challenging, demanding, and great new job. I work for an online writing company. Being online has several advantages over the traditional 9-5 office job. For one thing, I don’t usually do it but could work in my nightgown and slippers if I chose. I’m doing what I love–writing. And I get to set my own hours.

However, working online takes a lot of discipline. My supervisors don’t track whether I’m working or not; they have to trust that I’m on the clock when I say I’m going to be. They have to trust that I will meet my deadlines, and they have to trust that I’ll read, understand, and respond to client specifications.

Did anybody notice a common thread there?

Yes–my employers and I have to work on a foundation of trust because we’re not face-to-face. But even if we were, we’d still be operating on that foundation, right? Right.

I find it interesting that as a person with a disability, I work in a field that utilizes trust so much. I also find it interesting that my family has trusted me to be home alone 6-8 hours on weekdays (it has its ups and downs) while they work at traditional jobs. Why do I find this so interesting? Well, it’s because some people would say, “Of course you’re trusted because your disability is so mild.” Or, “You’re trusted because your disability is only physical.”

And of course I say–what is up with that?

What do I mean? Well, sad as it is, I don’t think many people with disabilities are trusted in any sense of the word. For example, a child with autism who functions well in his social group is nonetheless placed on a “behavior plan.” His teachers and even parents explain this is because of IEP requirements, federal law, and so forth. And that may be. But too often, the teachers and administrators at school have a negative knee-jerk reaction the second the child seems to “disobey” the behavior plan. Why? Because the child is not trusted to act appropriately.

How about another example? We’ll give the example a name this time. Cedric is an adult with a disability in his 20s-30s. Maybe even 40s. His disability is intellectual as well as physical. He has been placed in a group home (more on “placements” in a future post). He has also been given an IHP that states he must shower and dress within 30 minutes of waking up.

The stated reasons for this? “We have to use these plans to comply with community/state standards.” “Cedric needs to build his independent living skills.” Or even–and boy do I hate this one–“Cedric would never shower if we didn’t have it in a plan.” (Seriously, people? SERIOUSLY)?

But I’ll tell you the real reason for that goal: Cedric is not trusted. He’s not trusted to take care of himself, know his own needs, and set his own schedule.

Or how about this one? Yasmine is a college student. She has a physical disability. Maybe she uses a wheelchair, is blind, has a prosthetic–it could be anything. Anyway, Yasmine is pretty much allowed to do her own thing–except that the college’s disability services have forbidden her to use the dorm’s kitchen. No questions, no examinations, just flat-out forbidden it. Why? Because she might hurt herself. They don’t trust her. They may have “proof” of this, like parental testimonies or an old evaluation from high school, but a lack of trust exists.

Now, am I saying PWDs should be placed in danger just to prove trust? No. If there are real risks, they need to be addressed for everybody’s safety. And there’s nothing wrong with goals, either. But risks need to be assessed fairly, and goals need to be relevant and meaningful. PWDs need real say in what they do with their hours, their days, their lives.

We think that PWDs will be “independent” when they learn to bathe, tie their shoes, cook a meal, make a bed, take a bus. But should that be our standard? I mean, how would you feel if no one trusted you to do those things? To hold down a real job? To be honest with and respectful toward others?

Where’s the trust, people? How about we all work on finding it? And then we can worry about how to cook a meal and take a bus.

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Comments on: "The Trust Factor: Where’s the Trust for People with Disabilities?" (4)

  1. Hi! Long time since I commented, but I’m curious about your goals here. What do you think the solution should be? What if Cedric has shown from experience, that he tends not to shower unless he is asked? Sure, missing a day is not a big deal, but at what point does someone step in? Couldn’t a plan be better than nagging him frequently, which he might find embarrassing? I have no doubt that there is plenty of stereotyping that gets all mixed up in this. And I would like to overcome that. I people should not be judged based on their disability but rather on experience and reality, just like anyone else. I guess maybe that’s what you’re getting at?

    I guess I feel a little sympathy for your Cedric since I’m a dreadfully forgetful person (a completely different issue, I know) and I find it embarrassing to be constantly nagged about stuff that I have forgotten to do, especially if I can’t work on it right away and thus will likely forget again by the time I have some free time to do so. I often prefer if people will write me lists or notes or encourage me to form habits because it makes things run more smoothly and allows them to trust me more to do the things they ask. Am I conflating two completely different issues? Feel free to tell me if I’m way off base, because I don’t want to muddle the issue and I’m hoping not to be offensive. Tell me if I am.

    Best!

    • No, that’s not offensive. Actually, it’s a common question. And yes, some people show through experience that they can’t be trusted to do basic tasks, disability or not. (In my experience, teenage boys in particular have this weird thing about hygiene/messy rooms, for example). And having a mild disability as I do, it just plain ticks me off when people don’t seem to trust me. I figured others might be in similar situations.

      I suppose one solution would be if Cedric (or whoever) was taught to leave notes to themselves, like on a bathroom mirror or something. Or maybe the goal could be, “We’re going to start by saying you should shower within 30 minutes of waking up. If that works out, we can move it back to 35 or 40 minutes, then an hour, or whatever.” The ultimate goal would be to get the person to the point of setting his or her own schedule and following that.

      I also think that in a group home or other setting, it would be good if the people staying there were interdependent on each other. For example, maybe one person has a showering goal. Somebody else has a goal of remembering to load the dishwasher. Somebody else is learning the different bus routes available to get to work. Instead of having aides and staff nag everyone, or use goals as the basis for rewards and punishments, goal-reaching could be a team effort. That is, everybody reminds everybody else of goals. Everyone cheers each other on when goals are met. And everyone has the shared goal of setting schedules and navigating life as independently as possible.

      • That does sound like a great way of handling things. And yes, I do think that, if the idea is honestly to help people live more independently, then encouraging them to take more responsibility for things like the time of their showers, writing notes/lists, etc would be the best route. Unfortunately, I’m sure in many cases, the REAL goal is “make this person more convenient for the staff” rather than “help this person live more independently” which I think is a shame.

        And yeah, I can only imagine how frustrating it would be for people to treat you like you can’t be trusted to accomplish things that you are perfectly capable of because they seem to have some idea that you would be helpless. God, that would infuriate me.

  2. Yes, that does infuriate me. That’s part of why I would never move into a group home of my own volition–there’s too much focus on basic skills, “behavior,” and being convenient for other people. And if you think about it, that’s the way society views disability in general: an inconvenience. So we try to make PWDs as “normal” as possible because it benefits *us*.

    I would much rather see people hired as persons with disabilities’ caregivers because they truly care and because they see those people as individuals. I’d also like to see group homes be less focused on the group part and more on the home part. That is, the goal of one should be that everyone feels like family. Everyone does what’s best for each other, staff included, and people are treated as capable, wanted, and welcomed.

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