February is Jewish Disability Awareness and Inclusion Month (JDAIM) and this month, I have attended and participated in several JDAIM programs. As is often the case for me, I end up with many thoughts and opinions around this month and these programs. In general, I am conflicted.
Don’t get me wrong: I applaud the people and organizations that plan, implement, and participate in JDAIM programs. But most of the time, I walk away from these programs feeling frustrated.
Sometimes, I am even angry.
Why do I feel this way? If JDAIM is the time for programming to raise awareness and foster inclusion of people with disabilities, then how well are we doing this job and how inclusive are we being when the speaker or the panel only comprises non-disabled service providers, educators or parents of children and adults with disabilities? How inclusive are we really when the programs “invite” people with disabilities and when this invitation is extended only during the month of February?
And are we really entitled to pat ourselves on the back for having inclusive programs when this culture issues an “invitation” to disabled people to participate and when the program, activity, or class runs only during February?
One of the programs I attended this month was sponsored by an organization that provides social and educational opportunities for kids with intellectual disabilities. The panel consisted of 6 professionals from organizations providing services to children and adults with disabilities. In addition, the panel comprised parents of kids with disabilities--primarily intellectual disabilities. While each of these professionals had a different level of expertise on disability-related issues, not a single one of the panelists had a disability himself!
As a result, in my opinion, while these panelists do have expertise in their fields, they lack the lived experience of being disabled.
The topic of this program was inclusion and was advertised as part of Jewish Disability Awareness and Inclusion Month. How, I wonder, can one promote disability awareness without including the voices of the real “experts”: those who live each day with a disability?
A panel of non-disabled service providers and parents of disabled children can’t possibly influence peoples’ assumptions or dispel the stigma around disability the way a disabled person can. If anything, the absence of our voices perpetuates the notion that people with disabilities need to be cared for and can’t advocate or speak or demonstrate or participate in the conversation themselves. It is nice to support people with disabilities, but it is better to empower us to be seen and heard.
The evening got a little more frustrating when the moderator asked these questions at the start of the program: How many people in the audience are parents of someone with a disability? How many are educators? How many provide services to people with disabilities?
I waited patiently for the next category. It didn’t come. The moderator asked if she missed anyone. I raised my hand. “People who actually have disabilities!” She acknowledged my point, apologized, and asked the question. Not at all to my surprise, I was the only one there who fit the category and raised a hand. I was there to support my friend who was one of the panelists; she had more expertise on creating inclusive programming than the others. She was the only panelist who talked about including people
with disabilities in all aspects of communal life as well as in the process of creating programs.
When another panelist spoke about how all her participants want is to have a friend, be invited out for a walk even for 10 minutes or be invited to a Shabbos meal, I must have rolled my eyes out loud. Seriously? That is what this “expert” thinks? She is wrong!
Her participants want what everyone wants: to have a job, to give back to the community, to live a rich meaningful life, to be seen, heard and to be included just like everyone else!
One of the panelists, a parent of a child with a disability, listed things not to say to parents of a disabled child. Where is the list of things not to say to a disabled person and where is that disabled person to give the list?
A better question might be (and this must be addressed to a disabled person who is qualified to answer it) what are the best ways to make a disabled person feel included and welcome? How do you find out about his or her needs, ideas, and opinions?
Every year, I speak to a high school sophomore English class that is learning to conduct interviews and research about disabilities and the individuals who have them. I share my story. I tell them that my blindness isn’t my greatest challenge; it is the lack of accessibility—both physical and attitudinal-- and it is peoples’ assumptions and attitudes about people who are disabled. These fifteen-year-olds were nervous about saying the wrong thing and appearing insensitive when they talked to a disabled person. I told them to ask the person how he or she wants to be addressed and to talk with them in the same respectful way they would act to any stranger. The kids were given to read a list of books , written by people with disabilities and they were paired up with people who had agreed to share their stories. This
is creating true disability awareness.
If organizations and programs really want to be inclusive, people with disabilities need to be invited to participate in all planning conversations, and not just during disability awareness month. I’ve said it a hundred times: I look forward to the day that disability is considered a natural part of the human experience. There must be an expectation that disabled people with all kinds of disabilities will be participating, applying for jobs, able to access a building or a web site, or listen to a speaker. Our participation should be natural and organic. Barriers will be removed for those who are blind, deaf, mobility-impaired, or intellectually-impaired.
Universal design will be the norm: It will benefit everyone-able-bodied and disabled-bodied.
Thinking ahead 10, 15, 20 years from now, I believe the best disability awareness programs and the best way to get to my envisioned society where disability is considered a natural part of the human experience is to include children with disabilities at a very young age. When able-bodied children from an early age attend school, camp, and other institutional and recreational settings with children who are disabled, they don’t develop the same fears, stereotypes, and lowered expectations as adults. They don’t attach stigmas to differences; they are naturally accepting, much more so than their peers who have not benefitted from inclusion, and on the flipside it benefits the disabled child as well!.
Disability awareness programs are great: They can help create a more inclusive, equitable, and diverse society, but they must be implemented correctly.
They must be led by-- or at the very least include-- people with disabilities. Nothing about us without us is an important reminder that the voices of people with disabilities need to be at the heart of any disability awareness program. Yes, we need and welcome experts in the non-disabled sector, but our voices are the ones that can lend the most value because we live each day with disability as a natural part of our existence. I hope, one day, everyone will embrace us all and benefit from all that each of us has to offer- 12 months of the year!
- Michelle Friedman