This post was first published the first week of August, 2014 by the federal government’s blog Disability.gov. To date it has had over 1,500 hits.
As a Marriage & Family Therapist with multiple sclerosis, I write for Disability.gov, my own blog, and others like it, getting the opportunity to be a source of strength for people and their families. That’s why I was surprised when one organization denied my professional presence because I didn’t have that specific chronic illness/disability.
Though illness-specific groups may be essential to living well, the “micro” view of disability dilutes what’s important for the non-disabled world to know. Advocating for one chronicity over another may be a reason society doesn’t see an inclusive, “macro” view of disability/chronic illness.
For inclusion to be successful the commonality between disorders needs emphasis, not the differences between them.
Too many chefs in the kitchen. The more “chefs” that compete for “counter space”, the smaller the counter space per chef becomes. Just ask me and David when we’re in the kitchen together.
People’s attention span is similarly filled up. With only 8 seconds before the brain moves on, it’s imperative that disability advocates grab attention quickly. It’s not about the cause; it’s about whether the cause catches the eye. Think pink. If you associated it with breast cancer awareness, you just illustrated my point.
And when many organizations compete for the same amount of space, there’s always an organization that doesn’t make the cut. It takes lots of money to develop brand-awareness, keeping any disability in the public eye, which is where lots of fund-raised dollars go. For example, the success of breast cancer’s “pink ribbon” campaign reduces visibility of all other cancers. The “pinks” don’t even share the spotlight.
Interestingly, there’s been a pinkish backlash that the campaign is about advertisers rather than the illness itself. Some corporations may spend much more on advertising and product-development than they do supporting patients through corporate giving.
Holding a sign. Over millennia, physical characteristics have defined which partner we pick in order to further the species. Even today, positive physical attributes often define who we choose in a variety of situations.
Studies in social and behavioral sciences repeatedly demonstrate this phenomenon. Ask yourself who is generally more desirable – even approachable – a pretty, smiling woman or the same woman who’s using an assistive device?
While physical traits may vary across culture and time, physical disability seems always to be a disqualification.
Different is bad. When Mom and I went mushroom hunting, she knew what was safe to pick. Even so, except for the two of us, no one in our mushroom-loving family ate Mom’s soup. .
Most of us seek sameness: what we already know represents safety in a dangerous world. Like knowing which mushrooms to eat, being able to quickly pick out who is different is a survival technique that can increase our chances of being on the winning (not dead) side. While jumping to conclusions poisons thinking, when it comes to survival, what is thought to be safe is better than being sorry.
People with visible disabilities and chronic illnesses pay a stiff toll, daily. Even de jure protections like the Americans with Disabilities Act (ADA) don’t quickly change society’s de facto attitudes or treatment. Consequently, significant portions of the population entitled to the protections of the ADA remain invisible, choosing to avoid what happens too often to the disabled in work, housing, and relationship.
The in-crowd. My mother tried to get me to act in rational rather than group-think ways by employing inter-species logic that often involved lemmings. Like lemmings, we like to affiliate. Higher-order species have a “mine is better than yours” mentality; no one likes to be chosen last for kickball. Put another way, a person needs to feel superior to someone else. For example, I’m sometimes told, “At least I don’t have multiple sclerosis.”
Rather than forming a coalition that has strength in numbers, disability associations are often narrowly-defined and exclusive, repelling people who don’t fit the bill (think pink). Sameness attracts the same, so when selectivity combines with disability the result may be a man who judges other disabilities as not being as prestigious or disabling as his own. Or that another chronicity is less normal than his own.
Show me the money. Fundraising 101 teaches that attracting glamour to a cause is a win-win: Celebs earn brownie points for social responsibility and organizations gain public awareness which they hope translates into dollars.
How successful a cause is at the funding game is based on two realities from the world of social psychology: The group with well-produced and well-managed public relations and advertising is judged to be trustworthy and knowledgeable; and, the more followers an organization has, the more adherents it draws. The Labor Day telethon is illustrative: highly regarded spokespeople increase giving; and the more people give, the more others are likely to give, too.
There are reasons all people don’t unite under the disabled/chronically ill banner. If no one otherwise knew you were disabled, would you want them to know? Do you have trouble identifying with some types of disability? Want to escape the judgment, treatment, discrimination, politics, classism, fractionalization, in-fighting, and politics of disability inclusion? Or do you simply have other things (like eating) on your plate?
The discomfort with, fear of, and misunderstanding of the disabled population still exists, even among the disability community itself. Housing disproportionate numbers of the disabled, asylums existed as recently as fifty years ago. One-fourth of the nation’s disabled live below the poverty level while the federal government codifies what ought to be a moral imperative in the first place.
Disability is an 8-second sound-bite: Limbless vets, autistic kids, select high achievers. Inclusion? The disability community itself is exclusionary; perhaps we need to look for answers there, first.
Kathe Skinner has been diagnosed with multiple sclerosis for over 35 years and knows first-hand what discrimination and judgment feel like in work and relationship and is now working to adapt to a changed reality as her disease progresses. Thankful for stability in two areas of her life, she has been married for almost 30 years and is a Marriage & Family Therapist in private practice in Colorado where she lives with husband, David, and their 2 hooligan cats. Read more about Kathe at www.beingheardnow.com.
Kathe welcomes your comments and can be reached at 719.598.6232.
Illustration Courtesy of Stuart Miles
©2014 Being Heard, LLC
So when I head straight toward the bushes at the entrance to my building it isn’t surprising.
Bushes are a trigger in picturing my first (and only) experience as a new MSer in an MS support group. Recommended by my neurologist, the group experience was meant to help me cope with the way-past-due-diagnosis of my disease.
Instead, it freaked me out.
Big time downer.
Especially when a guy lost his balance and landed on his butt in a bush. That he laughed it off was horrifying.
I understand, now, the reason he laughed. Not only is laughing at the faux pas around the commonplace common, but situations that elicit that kind of response are also all too common.
The reality he must’ve experienced then is one I now share. Today I laugh, too. Because it’s truly comical at times and also because laughter is socially reassuring. “It’s alright, folks. I’m alright. Nothing to see here, move along.”
Knock wood, I’ve yet to experience anything dire in my navigational mistakes. Embarrassment to be impaired in public is what hurts. Most of us don’t know what to do in a situation like that. I put lots of effort into looking unimpaired, but when I catch sight of myself in a shop mirror, the reality of how I walk, for example, isn’t normal at all.
When I use an assistive device, a rollator in my case, parents scold their children for staring. I’ve yet to hear mommy or daddy use the opportunity as a teaching moment to talk about disability; rather it’s “don’t stare” before hurrying away. No wonder society hasn’t made much progress in accepting the disabled community who, except to children, remain largely invisible.
Recently, Disability.gov blogged an article about steps to take when being newly disabled.
It’s worth a read, especially if you’re not.
Specializing in couples work, Kathe Skinner is a Colorado Marriage & Family Therapist and Relationship Specialist. She works especially those couples where invisible disability is present. For over 10 years, she and husband, David, have been Certified Instructors for Interpersonal Communication Programs . Find the schedule for their next Couple Communication Workshop at http://www.beingheardnow.com© 2014 Being Heard
As a therapist with multiple sclerosis, and a Board member of the Invisible Disabilities Association, I can assure you that those with physical illnesses, esp hidden ones like cancer, ms, lupus, Crohn’s diseaes, fibromyalgia, anxiety, depression, etc., are not always treated with dignity. There are still people who will not hug someone with cancer for fear of “catching it”. An ms client was escorted from a grocery store after she fell into a display; the assumption was she was drunk, not that she fell because of balance problems. Read about my own experiences with people’s assumptions, misperceptions, and misunderstandings on my blog, ilikebeingsickanddisabled.com. and in my article for the government’s site, disability.gov, http://usodep.blogs.govdelivery.com/2012/07/25/looks-can-be-deceiving/. Mental health issues are as much a part of invisible disability as physical health issues are. Parsing them dilutes the effectiveness of advocacy. Without ignoring the special needs of any group under the umbrella of “disabiltiy”, it might, at some point, be worthwhile to give up the “me” in exchange for the “us”.