Disability Thoughts Week 4: Final Week

Greetings

I appreciate everyone who has come to read, chat or comment throughout this month-long journey with posts I hope you have found educational and enlightening as well as interesting. October is about over, can you believe it? My last and final post this week talks about chiefly the portrayal of people with disabilities in fundraising and more so about the reactions of certain people when Jerry Lewis – long time advocate, humanitarian, host of the Jerry’s Kids Telethon through the Muscular Dystrophy Association, passed away in August this year.

Recently, after his passing, it was made plainly and painfully clear to me, how death seems an excuse to let your very personal thoughts about people’s character and intention spew forth with little regard to the totality of the person, their legacy and many other factors that make up who you perceived them to be. So my larger goal of this submission is about disability but also to examine how we are when people die.

How are we? What do we do and say and how is that beneficial to the person that died, their family, others overall and the legacy -whatever it is- that’s left, is specifically what’s on my mind.

I was disappointed, to say nicely, by many of my fellow advocates that went on various listserves that I belonged to and seemed to rail and discount the contributions that Jerry Lewis had made.

I mean we thought Hugh Hefner was all about sex and objectifying women and for some he still is but until it was from the statements of Dick Gregory that portrayed the man in a different light. He’s still all of that -whatever you believe- but it’s all about perspective so for some there’s the same, what you knew of this or that person and any added perspective you may have gained. Where would we be if we ONLY looked at the bad (what we think was bad) that someone left?

I realize that Jerry Lewis portrayed people with disabilities as someone to feel sorry for and to pity and yes we detest those images and portrayals but was he alone in perpetuating that?  I dare say that it worked because that would make me seem all about the money and I’m not. BUT at that time it was working and all those on board thought they were doing the right thing. The money flowed – we shouldn’t fault him alone. We should fault a society that feeds on these portrayals.

I mean you’ve seen “Fido” or “Spot” on that ASPCA commercial, haven’t you? Would you give money if you saw him frolicking in fields of green grass, a large single family colonial in the distance, him/her running, tongue hanging out, tail wagging, clear eyes wide with excitement, a frisbee between his teeth and his owner giving him a belly rub? NOT. No, those clever marketing professionals instead show you Fido, cowering in a cage, gotta get a shot of that dirty, cold metal, cage, the empty gray cage, no bowl with his name on it, no collar, he’s boney and he shakes, hey marketing, find the one that shakes, he’s wary of humans, scared and scarred, malnourished and guess what, to top it all off, they play Sarah MacLachlan’s Angel and bring in the tissues! You wouldn’t feel anything if you’d saw Fido in the first light that I mentioned and that is completely on YOU (and our society overall) we as viewers, having preconceived notions and believing that sadness is the only way to people’s hearts and then their giving.

Things have changed, Jerry Lewis may have moved on before he could recognize or see the benefit of depicting successful adults with disabilities and I believe with education and our own eventual integration into the mainstream through inclusive practices, education reform and other things that helped our success, dare I say that he also could have adopted that same attitude? And he may have been pushed out because of long held beliefs or a difference in the direction of the mission and the show and it could have been something as simple as budget cuts, an aging man that needed to move on and was tired. Do we really know? If he was let go for the views changing, I wonder who else was in that car leaving the building? Who was on the viewing end hoping to see a little sadness and get their inspiration porn on that also left their couch because upbeat stories aren’t as entertaining as sappy ones? I don’t fault him or try to rip him a new one because it seems he was some kind of oppressor. I don’t believe that in his heart he felt that’s what he was doing. If that’s all you got, you need to look deeper. We are all expressing views and thoughts that are a result of our upbringing and our experience and not much more. Eventually we can change.

I understand there are other issues someone may argue about bigotry and his view on women comedians, and I get that but in this issue I’m not talking about that, I don’t know about it and I can find it out. I’m talking solely about a colleagues vitriol that spewed forth AFTER he had passed on.

This issue -for us as a society- is a need for us to feel better about our own life and current status by looking on (what we perceive as) the “horror” experienced by those being depicted. Case in point: I have muscular dystrophy. It is 2017 and yet when I still tell people about my disease (which I’ve been working with for 38 years) the face turns sad, they look at me with pity and I can only think about who they know that had “what I had” and subsequently died. Um, I gotta bunch of friends who’ve also died and so should you have friends who died naturally through accidents and a plethora of equally tragic things. So its silly really for the response.

When we see these images, we then begin comparing our experience to them, then we are moved and then we are propelled to try to apply the money ointment and feel we’ve solved the problems of the day. Now don’t we feel better writing a check.  This view -still held by so many- is not solely Jerry Lewis’ responsibility. He tried to do something about it however we were portrayed, the risk of asking for funds, the front man if you will, to be on television and exposed is not easy, you are then a target whether praised or punished, you are the target as the front man. He took that risk and his only goal then, was to raise the money. His goal was never to make both sides feel good about and do what the powers that be, said to do then, to make it happen.

My point, did anyone even ask as he aged how he might have felt about portraying people with disabilities in such a way? Did he know that this was a bad thing? Do other people know this is a bad thing? NOPE, they have no clue. So we assume he didn’t have a society to appeal to and convince to donate; a marketing department that essentially told him what to do, how to say it, producers orchestrating stories and lining up who they’d invite and who he’d talk to/interview, the person holding the cue cards with the kinds of questions that framed the pity palooza, the celebrities and the types of songs they’d sing so donors could be entertained, and probably the cutest, smallest, frailest looking, the  weakest booked by their cute appeal but fragile stature, that a complete and large association orchestrating the final script of what he would say? I’m certain he had all of this and more to adhere to, to please and to pacify. He was ultimately an employee in a larger scheme. You think he did all this – what you feel is a detriment to people with disabilities in mainstream media – by himself? You’re wrong.

Finally, what to do we have now? For those of you that remember the MDA of old, like I do, the one that used to pay for part of our new wheelchairs, power chairs are $ 12 – 20 THOUSAND DOLLARS (whose fault is that behind the dramatic expense- why don’t we take that on?) and MDA would pay usually two thousand dollars toward the bottom line directly to the insurance company. In addition to your 2K toward every new wheelchair which usually happened, EVERY 3-5 years, they would also then give five hundred bucks annually for the repair and maintenance of our chairs.

Firefighters, every Labor Day weekend would be out collecting money and now they are not permitted to do this – only at their station. Who’s fault is that? Why not call them up and tell whomever made that decision how disgruntled you feel?

MDA is now largely focused on cures and research. While a family struggles to lift a child out of their chair for the car, for the bed, for the bathroom for going up the apartment stairs, a child who is aging and becoming heavier and heavier instead any funds to buy a ramp van which costs nearly 50 THOUSAND DOLLARS, we don’t fault them for not being richer, do we?

Do I think all money received needs to go to supporting families with this disease? Of course not, but the split is lopsided. There are over 45 types of neuromuscular diseases so the strands for the cure will cure this one and not that one. The Bucket Challenge raised so much money for ALS, while those without the three letters (I have SMA) didn’t have much in their coffers and yes ALS is under the MD umbrella which many people don’t know.

Most of today’s research is often about mitigating symptoms and issues at birth and into youth. So the rest of old heads don’t receive treatment at all and are (silently) considered too far gone to be experimented on and “cured”.

I don’t want my point missed. Its not about money, or cures and research. It’s about being careful of who we blame for any issue we see as wrong and it’s about a type of silent respect that should come about in death regardless of anything else.  This issue of the portrayal of people with disabilities requires a shift on so many levels and any negativity after someone dies disgust me. There are more productive things to do with your time than to ridicule and low rate someone ever, but especially after they pass. What were you doing while they lived? Did you ask while they lived? Have you, in your own life- always had what you feel is the correct, debris-free lens in which to speak your own thoughts/ideas? Or has your vision been improved by education, time, forgiveness and personal experience and second opportunities? If what you were doing before the person left this earth, was productive and positive and an agent of change, then keep doing it. Don’t take time from your positivity and your own path of advocacy to berate others now that they’ve passed on. You do all of us a disservice and you too may be remembered for one single, less than favorable view or stance on an issue instead of all the collective good you may have tried to do. That would be tragic.

While I touched on it briefly, you can examine your own reaction to see if they are inline with a kind of inspiration porn and read more about Inspiration Porn here, and here.