Wednesday, August 19, 2009

Disability is Natural: Discussion No. 2

Ahhh, now we get to the heart of the matter: services. At least for me, this is the heart of what's been on my mind for quite a while.

Rather than trying to organize my thoughts and basically rephrase what I have found in Disabilities is Natural, I'm going to quote certain passages that have especially stood out to me, and use those as a springboard for my own thoughts.

Today's conventional wisdom has created many new realities. For example, professional expertise and parental advocacy have decreed that infants and young children with disabilities need specialized services. The need was created, resulting in the reality of early intervention and early childhood education programs. But the idea that created the reality is an illusion; it's another myth. Babies and young children with disabilities can achieve success the same way typical children achieve success: through the loving support of their families and their communities.

And I can see it, I can totally see it. How being in the system really succeeds in setting Finn apart and emphasizing his differences. And how much good is all this intervention actually doing him? I question that all the time. Is he really sitting, crawling, transitioning from sitting to crawling and back again, finger feeding, etc. because of all the therapy he's had? Or would he have done that stuff anyway in his own time. Didn't he do it in his own time anyway, regardless of the therapy? Sometimes - often - I feel like therapy is nothing more than something that cuts into our routine and takes up time in our house.

And let me be clear in saying that I am speaking only from MY perspective, and only concerning Finn and our family. I can't and won't speak for anyone else's family - everyone has to come to their own conclusions for their own families. So I'm not judging what anyone else is doing, I'm just questioning what we're doing for our family, and why, and how much good and/or harm is it really doing?

I'm not against therapy. But I am beginning to rankle at the artificiality of it. It's not that I think that Finn should be left to his own devices to develop without help or support. Certainly providing Finn with stimulation and physical exercise can only benefit him. But why can't we assume that the natural benefits of being part of a large family and having seven people who play with him and motivate him every day are as good as, or better than, formal therapy?

Some other interesting points:

Today's system doesn't recognize the paradigm that disability is more a product of environment than the body. Instead, conventional wisdom puts the problem of disability within the person. In turn, this leads to presumptions that (1) special services are required to solve the problems of people with disabilities and (2) the problems of people with disabilities can be lessened if they're made more like "normal" people. Add these two fundamentals together and you have a third (faulty) assumption: special services can make people with disabilities more like normal people.

Therein lies a paradox. Several disability-related laws (the ADA, IDEA, and Section 504) promote equal rights. By outlawing discrimination based on disability, these laws are attempting to right the wrongs of the past. They say, in essence, the "problem" of disability is a societal problem; that the barriers faced by people with disabilities are attitudinal and environmental. But the majority of programs and services and/or the way they're implemented (including early intervention, early childhood education, special education, and voc-rehab) send the opposite message: the "problem" is in children and adults with disabilities, so we will focus on them and not society.


Furthermore, when we focus on addressing the child's so-called problems, we pin our hopes on treatments and interventions. But what happens when these don't succeed in "normalizing" the child - helping him walk, talk, or whatever? Will we blame the failure on the child or the professionals providing the treatment? Or will we recognize that the premise (and the promise) of interventions was faulty to begin with?


Instead of preparing children with disabilities ("getting them ready") for real life, special programs actually just prepare kids for the next level of special programs! "Prepare" is probably the wrong word; once in the system, children are simply propelled along the path of special services.


Children are automatically shuttled from one program to the next. Early intervention propels babies and toddlers into early childhood education; early childhood education launches preschoolers into special education; and special education thrusts students into voc-rehab and the adult service system. At that time, many will join the estimated 75 percent of people with developmental disabilities who are unemployed.

Well, I could go on and on, clearly.

It's funny, because this all comes right after we had our bi-annual IFSP meeting with Finn's service coordinator last week. I'll honestly say that I didn't put much into it, already being so torn about therapy and services. I did nothing to prepare for the meeting and decided beforehand that there were no additional services I wanted to request at this time. And goals? Whatever. It's all so arbitrary.

You know what IFSP stands for, right? Individual Family Services Plan. I fail to see any individuality in the whole thing though. Finn has a certain diagnosis (Down syndrome), and is a certain age (one year), and they have a pre-determined, prescribed course of therapy that they offer and expect families to adhere to based on those two factors. And I can absolutely see him being propelled down the path of services for the rest of his life if we allow it. Already I am being told that once he starts walking, they (whomever they are) will want to cease in-home services and put him in a therapeutic preschool setting where he will receive "global" therapy. And where will they expect him to go from there? Will they ever tell me, "Finn is doing great! He's ready to stop services and go to regular school with his typical peers!" Highly unlikely. I have no doubt I will be fighting for those opportunities for him. But why do I - why does any parent - have to fight for the same opportunities for their children who have disabilities that the kids who don't have disabilities are afforded with no questions asked?

So, back to therapy. I'm not making any rash decisions at this point, but more and more, in my heart of hearts, I question it. I question a lot of things.


Jen said...

Such a good book. I'm going to read it again.

I think about the "getting ready" argument a lot. And you're right, the whole shebang is so arbitrary. Non-individualized. A facade.

Chrystal said...

I agree.

And another thing related to the "I" my daughter's IFSP, they used the wrong pronoun a lot. As in "M is a sweet, social girl with Ds. He loves to play."

Seriously? Things like that were all throughout this "personalized" document. Cut-and-paste doesn't feel so individual to me.

Monica Crumley said...

Great post. I, too, think about the benefit of therapies in our home. I value music therapy the most and wouldn't you know... it's being cut as an unnecessary service. I would cut all the others and keep music given a choice. I actually see its benefit for my little guy and wonder if some of the other therapies are only there to stroke by ego and tell me I'm doing a great job. The sessions are often play-based and I wrote in our last IFSP that I would like written notes after each therapy to explain what is being worked on and what the goal is. This helps me understand the "whys" a bit better. Otherwise, you're right, you have a full house of "therapists" as do I, eager and willing to teach our little guys to talk, eat with a fork, sing, dance, crawl, walk, play ball or color, etc. I appreciate your point of view and for pointing out the passages in the book. I may have to check that one out myself. PS: The T21 Afghan is still in Northern California, but will be heading south in a few weeks :-) Check out our blog...

Tara said...

It's funny, Lisa. I first found your blog when Simeon was just a few weeks old (he's now 6mos.) and I remember reading your posts about your ambivalence to therapies. At the time, I was a little dismayed. After all, I'm an OT. Therapy is necessary to help these kids acheive their goals, right?

But now, I'm right there with ya. Of course he's making progress...he's a growing baby, that's what they do. I can't tell you that it does a bit of good. And, as a fellow mom of six, I certainly agree about its intrusiveness into our lives. Ugh! Next Wednesday, we have PT, an IFSP, and speech for my 2yo all in one day! Yikes.