Growing a Tree

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

“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”?

 

Really Listen

It was pointed out to me that raising a child with a disability is unique in that the parent doesn’t usually share the disability, or have a disability at all.

In other groups, typically the parent(s) share in the characteristic. Baha’i parents know how to raise a child as a Baha’i. African American parents know how to raise an African American baby. Etc. People within the group know the practices, the cultural ins-and-outs, even the language.

But when a parent delivers a child with a disability, or the child acquires a disability later in life, there is a steep learning curve for parents who aren’t already in the know.

How does not participating in the disability color our advocacy? How do we know we advocate for the right things? Do we listen – truly listen – to the needs of the people for whom we advocate? Or do we just push for more services, more funding, more research?

As a mother, I can see from the outside how Down syndrome affects my daughter. I see the appointments, the therapies. I see her friends with Down syndrome, I see their parents. But do I really know what it feels like? Do I really know what it means?

Just something to think about, this person said.  Just a gentle reminder to really listen to those living this life before we type out blog posts, shoot off emails, storm capitals.

Natural Supports

One of the common phenomenon amongst parents of kids with special needs is a tendency to make sure we’re getting all the services we can to help our kids.

Totally natural, totally understandable, totally something I do myself.

Recently, I was challenged to think of it the opposite way: how can we do more with “natural” supports and rely less on the system that provides paid supports?

Woah. That kind of blew my mind. What did they mean, take as little from  paid supports as we can? And why the heck should I do that when I’ve been paying taxes since I turned 15?

I was getting all hot and bothered in the training session until this idea was fleshed out a bit further. It’s not that we shouldn’t use government funded supports. Indeed, in many cases these are either the only supports available or the only way we can get help for our kids. It’s not about saving money. (And to be clear: I am all for government-funded supports.)

It’s about sustainable supports and reciprocal relationships for our kids versus being seen as “people who just need help.”

So what’s a natural support? It’s a support that exists outside the realm of paid support, and usually it’s found in your community.

A perfect example is a person – let’s say her name is Grace –  who wants to be in a knitting group. For a while, Grace has a paid support person bring her to and from the knitting group. As time goes by, she gets to know people in the group and they get to know her. They enjoy each other’s company. It becomes a reciprocal relationship, just like any friendship between any two people, regardless of ability. Eventually, one of the people offers to give Grace a ride to and from the group, just like any two people who are going to the same event and live in the same area.

And there you have it – a natural support. This is someone who is going and from the activity anyway, and someone who enjoys Grace’s company. Grace now has a connection to her community that exists outside her family/guardian. That connection is absolutely priceless. Grace is now a stakeholder in her own community, and someone is a stakeholder in Grace. It’s a friendship, it’s reciprocal.

I was pretty gobsmacked by this concept,  I have to be honest. And it definitely opened my eyes to a deep-seated fear of mine – one I didn’t realize was coloring so much of what I feel about my daughter’s future. This concept of natural supports absolutely depends on parents accepting that people with “typical” abilities can be counted on without being paid and it relies on us accepting that people will like our kids for who they are, regardless of ability. I have a huge fear of Rowenna not developing genuine friendships with those outside the disabled community. I worry that people will just condescend to her, pat her on the head, spend time with her to fulfill required volunteer hours.

But it doesn’t have to be that way.

When my daughter was just a few months old, I consulted someone who has an adult daughter with the same diagnosis. She told me that I needed to cast my net wide and that I needed to cast it equally into the Down syndrome world and the “typical” world. She said it would be the only way my daughter could truly be independent.

I don’t think I understood that until someone helped me see natural supports and paid supports. Don’t we all use natural supports? When I have an awful day, I know which friend I can call. When I get a flat and I need help with my daughter while I figure it out, I know who to call. When I want to get together and knit, I know who will do it.

So why wouldn’t I consider the same types of relationships for my daughter?

What do you think of this idea of natural supports?

Shade

I sit in the shade. I live in the shade.

I sit in the shade because parents like me questioned the accepted practice that all babies with a disability should go to an institution.

I sit in the shade because parents demanded the right to an education for their children.

I sit in the shade because self-advocates demanded accessible buildings, jobs in the community, and their own homes.

I sit in the shade because legislators listened.

 

And now I’m left wondering which seeds I can plant, which saplings I can nurture, which trees need trimming…how can I advocate? How can I help my daughter advocate? And is there anything I learn along the way that might help others?

So what I’m hoping to do with this blog is plant seeds. Share the words of wisdom from the others I meet along the way, and hope to get comments here with your ideas and opinions.

And we’ll see what grows!

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