Growing a Tree

"Someone's sitting in the shade today because someone planted a tree a long time ago."

Archive for the month “February, 2012”

Killer Concepts

In the world of disability, there are three concepts that throw some major roadblocks in the way of people with disabilities.

Ready. Realistic. Never.

As the mother of a young child, I hear “ready” the most. My daughter is in therapy so she can be “ready” to access the world. When she turns three, she will go to school (while her typical peers stay home or attend daycare/preschool) so that she can be “ready” to go to kindergarten. She’ll start kindergarten at age 5 only if she is  “ready,” otherwise she has to stay in special education preschool another year.

So on, and so forth.

From birth, this concept of ready has sort of stuck in my craw, though I have never been able to articulate why until now: ready for what? No one is ready for school until they actually go and learn how to be a student. Kindergarteners come to school with all levels of ability – some can read, others have never cracked open a book. Some don’t even speak English.

Yet my child is held to some standard of “ready” in order to cross the threshold into a typical kindergarten classroom. My child will be held to behavioral and academic standards to which no other child will be held, all  because of the circumstances of her birth – she has an extra chromosome.

We do the same thing to adults trying to enter the workforce. They are required to be “ready,” and are held to high behavioral and productivity standards. They stay in high school longer so that they will be “ready” when they graduate at 21.

Think back to your first job: were you actually ready on that first day? Likely not. Even with a college degree or apprenticeship, that first day of work is nerve-wracking. Even if you have been in your field for years, switching to a new environment involves learning new procedures, new coworkers.

I recently heard someone speak who made the argument that when a person with a disability does not do well at a job, the problem is likely a bad job match, not that the individual wasn’t ready to work. I am inclined to agree with that statement.

Realistic is another killer concept, though this is not unique to individuals with disabilities. People are quick to tell others that their dreams are unrealistic. Want to be an actress? Oh honey, that’s not realistic. I’m willing to bet you have heard that yourself at some point in your life.

The problem with realistic for people with disabilities is that it is often applied to situations that are anything but unrealistic. People see the disability, and instead of rising to the challenge of “how can we make this work” they say “it’s unrealistic.”

Just like with any other individual, our role is not to decide someone’s goal is unrealistic, but to help figure out a way to achieve that dream. It may take a bit of imagination, and a willingness to not judge what achievement looks like. In fact, I think this is a huge obstacle for many parents (including myself). There is a tendency to go to absolutes – if my kid wants to be a nurse but does not have the academic skills to achieve that goal, then setting up procedure trays in the ER is just a token job. Looked at another way, setting up trays could be the fulfillment of that dream. This person gets to wear “the uniform” (scrubs), spend time with nurses and doctors, interact with patients, and work in a medical setting – all things that may attract that person to the medical field in the first place.

We have to be willing to see the dream from many different angles.

And last, never is an obvious one. How many dreams are squashed with a simple “never going to happen”?

Isn’t it widely accepted that failure is an excellent way of learning? Why do we deny people with disabilities the essential right to fail? I fail all the time – at work, as a wife, as a mother, as a friend. I also succeed. But those successes are the product of the lessons learned by previous failures.

We need to allow for the possibility of failure.

So here’s the challenge: how will you remove the concepts of ready, realistic, and never from your life and advocacy?

 

What to Do?

So now that I’ve dipped my toes into advocacy, I’m seeing some things that shouldn’t surprise me but they do.

What to do with parents of children with disabilities who don’t believe, don’t care, or are too afraid to believe?

Last spring, my husband and I attended a town hall meeting with our state legislators in regard to the state budget. There were major cuts to programs that are important to people with disabilities (for instance, city buses to get to and from work) as well as an almost $1 billion dollar cut to public education. We testified how the cuts would affect our daughter specifically.

Another mom testified about her child. This child also has a disability. She said the state was spending too much money on his education, on his transportation, on his health care. She claimed to be the first parent to ever sue the state for the right to place her child in an institution to “save the state money.” She won, and her child currently lives in an institution.

Now, as a mother to a child with a disability, I’d like to believe that there is so much more at play in her story than she let on. I would like to believe that she was afraid, that she felt unsupported, that she was at her wit’s end. I would like to believe that the financial component of her story is really just a cover. (Actually, I really hope it’s a cover because there are virtually no scenarios in which paying for someone to live in an institution is cheaper than in-home care and support. I’d hate to think there is a child in an institution based solely on some bad math.)

This is an extreme example, but there are other, more insidious examples that I encounter more often than I’d like to.

It’s the mom who says “My kid will never…” and the dad who tells me “You’re naive to think…” It’s the person who told me that my generation “doesn’t have to fight” for anything anymore because my child wasn’t put in an institution. Well, there’s a standard for you. “Not in an institution.”  (Calmly walking away from that particular conversation was an exercise in extreme willpower.) The people raising the next generation of individuals with disabilities are throwing up the very roadblocks that anger and frustrate them.

How do I write a legislator asking for a change in policy when there is another mom saying it isn’t necessary or that it’s too costly? How do I ask for fully inclusive education when there is a dad demanding a specialized school for his child’s diagnosis?

What do I say to someone who says there are no more fights when I’m staring down a system that patronizes people with disabilities by “doing for” instead of supporting, breaks the law by segregating kids in special education, and creates dependency on the system with stringent Medicaid laws and sub-minimum wages? (Yes, it is legal to pay a personal in a sheltered workshop sub-minimum wage – we are talking literally pennies a day here.)

Where do you strike the balance between respecting everyone’s viewpoint, making sure all voices are heard, and still creating positive, meaningful change for all?

“Problem”

Perhaps one of the biggest challenges facing disability advocacy is that society insists on seeing people with disabilities as problems to be fixed, not as just people.

This comes as no surprise. For a very long time, we have used the Medical Model for approaching disability. This model asks “what’s wrong?” and “how can we fix it?” It is a completely deficit based approach and sets up the disability in question as a problem.

I have experienced this myself with my daughter and it is frustrating to no end. We recently went to a clinic appointment where we were made to meet with a speech therapist, despite our requesting to skip that portion of the visit. We told that speech therapist we had no concerns for our daughter, but she insisted on thrusting the Medical Model on us, and it felt awful. She spent a good 45 minutes explaining to us all our child couldn’t do, all she did wrong. She proceeded to give us suggestions for things to “fix” these problems.

Think about that. We went in there with no concerns or worries. We left with pages (literally) of suggestions of things we could do to “fix” our daughter’s perceived  “problems.”

No discussion of what she can actually do, no discussion of what she does well. No discussion of what we’re doing that actually works.

The Medical Model is alive and well today, folks. Yes, it has its place. Yes, diagnoses are important, as is appropriate medical care. But the danger is applying it where it need not be applied, and it lies in using it to define people as problems.

What I’m advocating for is a balance. Identify the unique needs of an individual, and instead of labeling them as problems, find ways of using paid and natural supports so that person can achieve his or her goals.

His or her goals. Not society’s defined goals. Not a school district’s defined goals. Not a doctor’s defined goals.

Indeed, when it comes to defining people’s “problems,” it often seems like they are not problems at all.

In a world full of fashionable slip-on, velcro, zippered, or buckled shoes, do we all need to learn to tie laces? In a world full of technological devices that can assist with communication, is it really a problem if someone cannot speak verbally? And so on.

What do you think? Is there danger in defining people as problems and by their problems? Which doors would open if disability was no longer seen as something to fix, but as simply a different way of doing things? As parents, do we perpetuate the “problem”?

 

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