Almost every week, certainly every month, we are asked to “celebrate” awareness of a disability or of a medical condition. We see ribbons of every color, we see walks and fundraisers, we hear the numbers about the worldwide prevalence of the monthly cause.
Although I am sure most people and advocacy organizations are well intentioned, I am getting a little tired of awareness campaigns.
First, when talking about disabilities, we should promote acceptance.
Acceptance, because we all have rights that must be respected. “Awareness” often brings an undesired side effect of pity, and depending on what organization is promoting it, a lot of misinformation and pain to the disabled people supposedly benefiting from the campaign (Autism Speaks being the perfect example of this abusive practice).
Second, “Awareness” campaigns are usually planned by non-disabled people, with a non-disabled perspective. The intentions are generally good but the unintended consequences are sometimes silencing and damaging.
When non-disabled people, or advocacy organizations, make the decisions about how the awareness campaigns (or their advocacy efforts) are going to be run, and they don’t listen to what disabled people have to say, the message can be a mistaken one.
Instead of awareness of what access needs, accommodations and means to utilize our strengths, the focus becomes our perceived deficits, how “hard being disabled is”. In some cases, the focus shifts to our families, usually with a damaging rhetoric (if the organization is – again – Autism Speaks, the damage and hurt are enormous).
There are seemingly subtle, but important, differences between “awareness” and “acceptance” campaigns.
To me, acceptance implies ready access.
Acceptance implies: we make the decisions, we lead.
Another seemingly small problem, which is actually an important topic, is what is often claimed to be the goal of some “awareness” campaigns: quality of life.
In itself, quality of life is a perfectly acceptable and desired goal. This changes when non-disabled people try to define disabled people’s quality of life.
It usually includes “fixing” us to be as close to “normal” as possible.
Or it is mistaken by a definition of “independence” that has nothing to do with what we really want or need.
Each one of us has a personal view of what quality of life (1) is, of what independence is.
Recently, I was part of a discussion about what should come first, awareness or access.
I argued that access should come first, so we can then decide how to make people aware of what being disabled means, of what services we need, of how non-disabled people can help us advocate.
I also argued that the goal of “quality of life” should not be highlighted, being so subjective. Even when the idea is full of love and legitimate good intentions, even when the idea comes from people we really trust. It is still a subjective and personal thing and our perspective will be always different from the perspective of non-disabled people.
Highlighting equality and respect is a better approach.
My argument: give us access, we will let people know what we need, how we need it, when we need it, and we will define our own quality of life. Quality of life from our perspective. Our lives, our perspective, our needs, our expectations, our goals, our plans.
Your (non-disabled) support.
Give us access, we will lead.
We know what can be more helpful to us.
Access, respect, equality.
Then we can make people “aware” of what disability (or a specific disability) is.
But then, this is not “awareness”, this is Acceptance.
Amy, your communications have been so revealing to me as mom of a 25-year old daughter who has Rett syndrome, president of a local chapter of The Arc and someone who knows a multitude of people who have a wide range of things going on with them physically and neurologically. While I support research for “a treatment and a cure” for Rett syndrome, I struggle with the desire to fix what is “broken” for my daughter who, to me, is perfect in every way ( although, for her sake, I wish she could take herself to the bathroom without counting on me or someone else to help!). In Indiana, the month of March is Disability Awareness Month… while I value the motive of it, I cringe every time I type it. As an organization we aim to be a change agent of sorts, to help open the minds of people who live in our rural communities to the abilities of people who have challenges of sorts (I don’t even like to use those terms…), but we intend to help young people come into their leadership capabilities and our summer day camp staff now includes young people with “disabilities” because they have first hand knowledge and are often the better teachers. We have chosen to visit kindergarten classrooms over the past few years with an interactive presentation on community accessibility with a Lego-ish poster depicting accessibility in a community. We share a few story books and, when possible, bring a young adult self-advocate along to read. I trust from your perspective, and that of my daughter, that we are helping to introduce to these young children that people may be different but everyone wants to and can be part of the community, everyone has value and can contribute in different ways. Someday, in a better world, we may not need a “Disability Awareness Month.” In your opinion, which I highly regard, what might be a better name for such an effort in the meantime? Is “acceptance” marginally better or plainly unsuitable? We’ve always steered consciously away from the pity or inspirational approach in our communications because of the nature of victim-ness or cuteness… being recognized for wholeness as you are should not require such explanation. But, being a mom of someone who is unable to verbally express herself and caring about so many others who are overlooked, invisible and misunderstood, it’s important that I not overstep and offend my/our community. I appreciate any feedback you might have. Best regards to you and to your efforts!!
Well said Amy! Should I translate this one? I think so!