The Truth about Intellectual and Developmental Disability Discrimination

When I was a child, people with what we call today "Intellectual and Developmental Disabilities" (I/DD) had little influence on the decisions made about us by the society of non-disabled, "neurotypical" people. We either lived with our families, or we were placed into the Developmental Centers (DCs) that the State of California is now closing. Even those of us who had savant skills that would have been useful for technical problem solving were still excluded from utilizing their savant skills and participating in mainstream society and recommended for placement into DCs.

According to many schools, housing projects, and other agencies that were previously composed largely of non-disabled people but now claim to be moving toward inclusion of I/DD, such discrimination is being eliminated. Federal and state grants are providing "diversity" incentives for corporations and schools to include those with I/DD, and so companies are now hiring people on the autism spectrum into decent-paying jobs. Mission accomplished, right?

Not so fast. When those incentives for helping those with I/DD were passed, their sole goal was to provide incentives for schools and business to include all of those who have been socially disadvantaged by developmental disabilities. However, in discussions of "diversity" incentives, intellectual and developmental disability is treated as a single, huge lump of people who are to receive the same incentives. This is because of an old thinking habit that people have when they are talking about minority groups, which is that each minority group is a group of people who are experiencing mostly the same problems. This thinking has worked somewhat effectively for other minority groups, such as African-Americans or LGBT, whose exclusion from society has stemmed largely from hate, and who in a society without hate would not need any help beyond what the majority have. But helping people with I/DD is not just about reversing the effects of hate. We genuinely need, because of our disabilities, accommodations in order to survive in today's society, regardless of what people think of us. Lumping us all together as one group of people along with the other minority groups does not effectively solve the problem of discrimination, for reasons I am about to describe.

People with I/DD fall on a spectrum of needs. Some have mild conditions such as Asperger syndrome, that affect their social interactions but otherwise do not need assistance beyond what society typically provides for basic survival. Others are at the extreme where they are unable to speak, and communicate only with pictures or gestures. These people need support facilitators and protective supervision at all times to ensure their health and safety in our society. I am somewhere in between; I can speak and solve complex physics problems, and have a Ph. D., but have some deficits in both social interaction and in executive function (knowing what things to do and think of next at any given time). Because of these deficits, I require 24/7 protective supervision despite being able to speak fluently. Different people with I/DD have different needs and require different amounts of planning in order to become successful. The problem is that, in the I/DD community, the rewards in favor of helping those with I/DD provide the same incentives for those who do not need much accommodation by society and those who do. Thus, an Asperger adult seeking a job in computer engineering can be quite appealing to a company who can receive grants and tax credits for helping someone with I/DD, but does not have to plan for the person's supports because their employee doesn't need many. However, they get the exact same grants and tax credits for helping someone who needs a support facilitator there at his job, but must plan for the support facilitator's commute and any necessary travel, and ensure that his salary does not make him ineligible for the supports that he needs. For this reason, schools, corporations, and housing agencies accept applications from I/DD people for the sake of these generous tax breaks, but fail to provide support for the subset of I/DD people who need support facilitators. So, instead of eliminating discrimination, we've just shifted it from discrimination by the majority groups against those with I/DD to discrimination within the I/DD community by people who need less support against those who need more.

What we aide-dependent people need is not a general, one-size-fits-all tax break or other reward for helping "all" of those with I/DD, but incentives for agencies to plan for needs appropriate to each individual with I/DD. If a landlord accepts a person with mild Asperger's who behaves somewhat oddly but otherwise doesn't need any special supports, we give them a tax break for overcoming the previous prejudice. If a landlord, employer, or worship community wants to accept someone who is nonverbal, in a wheelchair, and communicates only by the movement of his eyes, and requires 24/7 supervision, we need to audit them, see if they are truly planning for the needs of the support staff, and then make it worth it to them to provide such planning by providing a larger incentive. Only when our society truly appreciates the support required for the aide-dependent people to function in the community will all people with I/DD be included.

Delaine Eastin at UC Davis!

I had the opportunity of meeting gubernatorial candidate Delaine Eastin when the UC Davis chapter of the California Women's List invited her to speak. She is concerned about "vulnerable groups", including those of us with disabilities.