Born This Way

There are three major parties in disability advocacy.

1. People who are born this way.

2. Those who aren’t but join the disability club for a variety of reasons including violent trauma, both physical and psychological, old age, acts of god, and biological and environmental impacts.

3. Friends, family, and caregivers who love and have a stake in the life of a person living with a disability.

 It’s caught my eye what a dramatic difference which party we belong to can make on our opinion of what’s best as an advocate.  Often a disconnect can appear between families, persons born with disabilities, and those who acquire their disability.  Each parties goals can be quite radically different from one another.  As an advocate, navigating those waters can be tricky.

 The following is an expert from DTN (Disability Today Network) on the difference between being born versus acquiring a disability.

 This is a tremendously important topic, though at the same time, I’d hate to see it become divisive. That said, as someone who has had physical disabilities all my life, I think one way of differentiating the two experiences is by picturing two kinds of mixes.

You know those dishwasher pods that have two or three cleaning substances kind of swirled together, but separately enough so you can see each one in its own segment? To me, that suggests how someone who acquired a disability might view how their disability mixes with the rest of their personality and life history… all together, but also somewhat separable.

 Whereas, for me, it’s more like water and Kool Aid after it’s been vigorously stirred. Theoretically there are different substances, and you can imagine them as separate, but you can’t actually ever separate them. I can think back at what my life might have been like without my disabilities, but then I find my imagined self is no longer me. I sometimes do wish the more inconvenient and painful aspects of my disabilities could be done away with, but then I have a hard time picturing who I would be anymore.

 I think that’s why many of us are ambivalent about the topic of cure and even prevention. In the abstract, yeah, these are worthy goals, but I have a hard time personally relating to them. If I were to suddenly acquire another disability … say, lose my sight … I bet I’d feel differently about that condition, at least for a good while.

 -Comment from the Disability Today Network

 Interesting take right?

 A classic example of what I’m talking about is the ongoing Autism Speaks controversy.  Autism Speaks is influential, has a wide donor base, but experiences a lot of push-back from the autistic community.

The controversy was famously captured in a call to action speech written by Suzanne Wright, co-founder of Autism Speaks.  Long story short, she characterizes families living with autism as desperate, ‘not living’, and facing a monumental health crisis.  In 2010, Autism Speaks spent only 4% of their multimillion dollar budget on inclusive living supports.

 Ouch.

Where’s the disconnect?  The mission of the organization is dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism.  Autism Speaks has a goal of an autism-free world.

There is a fundamental disagreement between the 1st and 3rd perspective here. People born this way and people who have a stake in the life of a person with a disability are disagreeing to the tune of millions of dollars in completely opposite directions.

Finding ‘cures’ and why they should be found is a controversial subject at best.  I’d love to see people with spinal injuries walk again, watch the deaf hear and the blind see.  At the same time, I think it’s a right to be seen as a whole human being.  A disability does not make a person less than human. Advocating that an entire group of people cease to exist does not make people feel human.

My suggestion to Autism Speaks and their advocates is to not generalize.  Every person is an individual, the supports they require are specific, and the solutions to their individual concerns are unique.  It’s most important as an advocate to listen.  Reading the description of Kool-aid versus dish soap tablets reminded me that listening and being aware of all perspectives is important.  Autism Speaks should do less speaking and more listening. Listening has a wonderful way of creating empathy, support, and can change a perspective.