We came across some fascinating information from Kids as Self Advocates (“KASA”) on Facebook and thought that this organization’s insights were well worth sharing. Of particular interest is its published work on the distinctions between the medical model of disability versus the social model of disability, which I’m going to get more into below.
But, to give you an idea of what KASA is about, according to its website, it is a Family Voices project of the U.S. Maternal and Child Health Bureau, which is part of the U.S. Department of Health and Human Services.
KASA describes itself as follows:
Kids As Self Advocates (KASA) is a national, grassroots project created by youth with disabilities for youth. We are teens and young adults with disabilities speaking out. KASA knows youth can make choices and advocate for themselves if they have the information and support they need.
We are leaders in our communities, and we help spread helpful, positive information among our peers to increase knowledge around various issues. We also help health care professionals, policymakers and other adults in our communities understand what it is like to live our lives and we participate in discussions about how to help each other succeed.
In other words, KASA is a federally funded program designed to give kids with disabilities a voice in the quality of their own lives. So, when this group of amazing young people came out with their information sheet on the Medical Model vs. the Social Model of Disability, which is adapted from work done by Carol J. Gill of the Chicago Institute of Disability Research, I took notice.
Ms. Gill’s research and the position asserted by KASA make sense. Society’s perceptions about people with disabilities is largely based on the medical model of disability that emphasizes what has gone wrong with a disabled person’s body and/or brain.
The human body, including the brain, is designed according to a foundational genetic blueprint. When the instructions on an individual person’s blueprint go haywire, or an illness or injury compromises the integrity of the body and/or mind, such that the person is no longer constructed in a manner that adheres to the foundational genetic blueprint of all human beings, those of us whose bodies and brains most closely match the standard boilerplate of a person tend to regard those whose bodies and brains do not match so closely as something other than human.
When we fail to regard a person as human, we fail to empathize with that person. We find the person off-putting because we’re focusing on what makes him/her not like us rather than the fact that it’s a person we’re dealing with, all differences aside.
According to KASA, the medical model of disability asserts:
- Disability is a deficiency or abnormality.
- Being disabled is negative.
- Disability resides in the individual.
- The remedy for disability-related problems is?cure or normalization of the individual.
- The agent of remedy is the professional.
However, the social model of disability asserts:
- Disability is a difference.
- Being disabled, in itself, is neutral.
- Disability derives from interaction between?the individual and society.
- The remedy for disability-related problems?is a change in the interaction between?the individual and society.
- The agent of remedy can be the individual,?an advocate, or anyone who affects the?arrangements between the individual and?society.
Really, the focus of the social model is to take the “OMG!” factor out of disabilities and confront them like any of life’s other many challenges. This viewpoint has a lot of merit.
When it comes right down to it, disability is just something that happens to a person. It’s not a judgment being exacted upon anyone. Like car accidents, there is a statistical likelihood that a certain number of humans will be impacted by disability. You could win the lottery and/or develop meningitis that leads to permanent brain injury. You can meet the love of your life and/or be born with no arms and legs.
Like money and behavior, disability isn’t good or bad. It just is. Whether it is perceived as good or bad comes down to the opinions of the people experiencing the perception?and value systems of the culture in which the person with the disability finds him- or herself.
My dad is hearing impaired and has been since childhood. Growing up, it never occurred to me and my sister that our dad was handicapped. Perish the thought! He was a successful professional (now joyously retired) and a total wiseacre.
When warning new friends about our dad as kids, we would say that he initially comes across as tough but he’s actually a cut-up. He has a very sneaky, Southern dad type of tongue-in-cheek humor and he cracks himself up when he pulls one over on you. Oh, and, by the way, he can’t hear very well so please look at him directly when you speak because he may need to read your lips, particularly in noisy restaurants.
If you asked him if he thought his hearing loss was a negative, he’d likely shrug and say that it has presented some inconveniences but then he’d point out the number of times he’s turned off his hearing aid?and took a blissful nap?while my sister and I were arguing as kids, refusing to indulge the attention-seeking shenanigans or otherwise get sucked into the drama. Or, he might tell you about when we thought he had his hearing aid off and he’d catch us using words that were prohibited in our household.
I’ve since encountered other people with hearing loss that isn’t nearly as severe as my dad’s and you’d think they’d been put out to pasture. I think the example he set has had a huge impact on my perceptions of disabilities and that of my sister. She has some medical issues herself that technically qualify her for permanent disability. But, she’s adamant that she’s not going to stop living a normal life and pushes herself to her personal limits every day. In fact, most people have no idea what she struggles with every day because her health issues aren’t something you can see just by looking at her and she’s certainly not sitting on the sidelines of life.
Maybe it’s that mentality that inspires me to advocate for children with disabilities – I know they are capable of much more than what most people realize and deserve every opportunity to become productive members of society. Having handicapping conditions makes life more challenging, but it doesn’t stop it from being worth living and that, I think, is what the non-disabled community needs to understand.
I am an agent of remedy, as are our volunteers and experts, the children and parents we serve, their extended family members and friends, and those professionals working with our clients who are trying to make a positive difference. The remedy for disability-related problems really does lie in the interactions between those with disabilities and the rest of society.
Think about it. If humanity were to go through a sudden shift of evolution in which everyone was born with three legs rather than two, the clothing and shoe industries would adapt to sell us three-legged pants and three shoes in a box rather than a pair. If it became normal to have three legs instead of two, this would be a reasonable adaptation.
The difference with the disabled community is that their differences are not common. It is because they are uncommon – they fail to comply with what is considered “average” – that the rest of society tends to feel put out by accommodating their differences.
It seems to be a default position for many people that if the bulk of society doesn’t need something, the few people who do need it are inconveniencing the rest of us. But, I assure you that the person in a wheelchair who can’t get up a flight of stairs is far more inconvenienced than those of us who have to stop and install a ramp to give that person equal access.
Building a ramp is a one-time activity after which point the person in the wheelchair can go about his/her business with little fanfare. Sitting at the bottom of a flight of steps indefinitely without being able to access whatever is needed at the top of them is a perpetual problem for the person in a wheelchair. Mode of ambulation shouldn’t be a barrier to access. It’s a difference in how a person gets about, not an assessment of whether a person is worthy of getting about or not.
And, that can be extended to any number of handicapping conditions. Schizophrenic hallucinations are symptoms and they are highly inconvenient to those encumbered by them. However, many people with schizophrenia can function fairly well so long as they take their medication and participate in therapy. Their challenges lie in being able to distinguish between reality and what their imaginations are feeding them, but that doesn’t mean they don’t need to buy groceries and pay their electric bills.
The same can be said for mood disorders, learning disabilities, attention deficits, developmental disorders and on, and on, and on. Everyone, whether disabled or not, is a person with a life to live. How that life is lived and the challenges that come with it vary from person to person. It’s not that the medical needs of a person with disabilities should be ignored; they simply shouldn’t define the person’s existence.
Setting the challenges that come with disability aside from the other forms of diversity that we’re finally learning as a society to tolerate (race, sexual orientation, etc.) and saying that people with disabilities are broken (suggesting “less than human”) rather than simply living different lives in response to their unique challenges is passing judgment over the importance and value of their lives, which is something that the rest of us would entirely resent if someone were to do it to us.
Disability rights is a civil rights issue for a reason and teaching kids with disabilities to advocate for themselves as engaged members of society is a commendable endeavor. It has been enlightening and encouraging for me to learn of KASA.
KASA is looking to expand into state-by-state chapters with one currently in Connecticut. If you are interested in starting a KASA chapter in your state, click here to learn more.