Tuesday, July 18, 2017

Not Appreciating #NotSpecialNeeds

There's this video circulating called #NotSpecialNeeds, featuring a cast of individuals with Down Syndrome.

The narrator says:
Special Needs?...

What we really need is... education, jobs, opportunities, friends, and some love. Just like everyone else. Are these needs special?
Interspersed between those two paragraphs are examples of how people with Down Syndrome might indeed have special needs. Such as if they could only eat pterodactyl eggs or if they needed cat massages everyday.

You are then directed to the NotSpecialNeeds website where they explain why it's important that we drop the term "special needs" when talking about Down Syndrome and other developmental disabilities:
The phrase "special needs" is actually counter-productive in so many ways: 
1. By definition it “exceptionalises,” segregates and excludes. 
2. It stigmatises as it is associated with segregated settings (e.g. special schools, special workshops and special group homes), and accordingly for many, a “special needs” label is effectively a one-way ticket to a separate, segregated, low expectations pathway through life. 
3. Being a euphemism, it is increasingly considered patronizing, condescending and offensive by people with disabilities. 
4. It serves to distance people with "special needs," as it implies that their needs can only be met in a "special" way or by "specialists." This complicates inclusion of people with disabilities in regular education and employment. 
5. In “exceptionalising” disability and reinforcing attitudinal barriers, it hinders the recognition of disability as a part of human diversity, and slows the realization of human rights for people with disabilities. 
6. Recent research suggests that people respond more negatively to someone described as being or having "special needs," compared to someone described as having disabilities or a particular disability.
We're told by the website that people with intellectual and developmental disabilities might require extra assistance to meet particular needs, but that doesn't make their needs any more "special" than other people's needs.

Which seems to be stretching the point, in my mind. I get what they're saying in this video and on the webpage, but I don't fully agree.

Most people with Down Syndrome and other forms of intellectual and developmental disabilities do indeed have special needs that affect their everyday ability to independently meet their educational, vocational, self-care, medical, social, financial, home organizational, and even behavioral needs. Those needs vary from individual to individual, of course.

The list up above complains about special classrooms or special work-sites for people with disabilities -- usually those with more severe disabilities that prevent them from fully engaging in less expensive integrated classrooms or work locations. Without those segregated settings, we're finding that people with more severe disabilities are typically not becoming more involved with their peers and their communities. Instead, they're doing without.

For example, here in Iowa they shut down most of the sheltered workshops. These were work-sites at places like Goodwill or Rural Employment Alternatives where people with moderate to severe disabilities could work on basic job tasks with lots of assistance at their own pace and earn a little bit of money. Those sheltered workshops went away with promises that community-based employers -- stores, hotels, offices, etc. -- would step up and we would carve out fully-waged jobs with minimal job coaching for everyone. And for some folks with disabilities, this really worked out. But many others found themselves without any employment opportunities or wages because of the severity of their disabilities.

We are struggling to keep funding in place for special education classes and Medicaid-funded home-based and community-based services to help more disabled individuals stay out of more institutional services -- or worse. When you see disabled people working at a store like Target or Walmart with assistance from a job coach, that job coach is most likely being paid for with Medicaid dollars. When you have a disabled neighbor who gets a staff person to come to their home to help with their checkbook and their shopping, that staff person is most likely being paid for with Medicaid dollars. When you have a group home set up in your neighborhood that supports 3-4 intellectually disabled adults with staff who help with their cooking, showering, and behavior management needs, that group home is most likely being paid for with Medicaid dollars.

This website is quibbling over whether it's exceptionalising to note that people with disabilities have special needs. And minimizing those special needs makes it more difficult to make a case for the continued existence of those home- and community-based services.

I used to think that people had a basic moral understanding of the need for services for people with intellectual disabilities. These days, the states and the federal government are constantly looking for ways to slash spending for society's most vulnerable citizens -- and I'm not sure that people really get it until they find themselves in the position to need those special services.

So instead of fretting about when someone says the phrase "special needs," spend some time writing to Congress about the need for continued support for those with special needs. We've spent decades building up these various services. I hate watching them be dismantled. You should too.

1 comment:

Nancy O'Leary said...

You are the voice of reason...and intellect. As a mother of a child with SPECIAL NEEDS this video is absolutely terrifying to me. They are all unwittingly working to have funding taken away from people who desperately need support services that our government is constantly trying to cut. My daughter can't brush her hair, she can't count money, she doesn't understand that she can't hug everyone she meets. Can she make a cute video describing all of the wonderful things she can do, like skiing, reading and swimming? You bet.