The Mudcat Café TM
Thread #13940   Message #117523
Posted By: catspaw49
24-Sep-99 - 11:24 PM
Thread Name: Ethical Question - Handicapped Fans
Subject: RE: Ethical Question - Handicapped Fans
Well.....Here we go............

Margarita and I have been corresponding some, sharing some thoughts and experiences, about our special kids. She has two, we have one, and we've had several others in foster care. I've also been dealing with caseworkers, school officials, therapists, counselors, psychologists, psychiatrists, and other psychobabble junkies in the "Do-Gooder" dodge for way too many years. At the risk of alienating everyone, I'll offer up an opinion.

I read somewhere that an airplane crash is never traceable to one specific error, but a long string of circumstances. Safety regs that come out after a crash generally address the entire chain to some extent. What happened at this concert cannot be blamed on any one thing or individual. Everyone involved has some culpability here and part of it can be blamed directly on the changing attitudes toward the mentally and physically challenged in our society, and what the "Psychobabble and Sociobabble" artists are portraying as the most desirable "treatment of the day." We are much freer in our dealings and much more understanding, but those who live and work with MRDD people can easily relate to Tom Cruise standing on the highway screaming while Dustin Hoffman keeps repeating "K-Mart,348 Walnut Street, Cincinnati,Ohio" as the answer to everything. We go through it everyday, many times a day, often many times an hour. To the chagrin of many, the plans and place choices made to take MRDD groups out are often made by supervisory folks and management types who are so locked-in to the latest treatment idea that they fail to see the reality of the situations. Parents, relatives, caseworkers and other caregivers have got to have the guts to take a stand and quelch some of the dumbass ideas that don't have a prayer of success. Someone up the thread asked if these folks actually wanted to see Davey to begin with. Probably not, but this type of outting is becoming increasingly popular with little if any thought given to selection of venue or group makeup. If anyone had asked the caregivers, they could have told them what the reaction would probably be from their person involved. Then the known "problems" would be provided with a different activity. None of this would have happened if ALL the responsible parties had shared in the decision of who to take and who to leave at home this time. Did they all stand up and shout? No. So if the one or two hadn't been there, likely as not there would have only been a random and easily controlled outburst.

When we are out we generally know what to expect and when, and we try to take steps we know will work to control behaviors that are offensive or disruptive. We don't do this at the expense of our other kids..they still go on about the business at hand. Dad or Mom fix up little Tris. Yeah, it gets old and frustrating, but the choice is and was ours. But this brings up the point that a lot of us, try as we might (some don't at all) have a difficult time with MRDD people since we really don't understand and they enter our "controlled space" as a wildcard. Believe me, I understand how hard it is for some to be around them. Reminds me of the adult fellow who used to ride the bus with Tris. I'd get on the bus to get Tris off and he'd jump in my face and yell, "APPLE PIE"....."JUICE"..."SHIT"..."APPLE PIE".......with a big smile all the time. You get used to it and I'd play it back yelling responses..."TWO PIECES"..."GIMMEE CLAM"..."NAH,DON'T HAVE TO"..."MAKE IT PEACH". I don't know how much Jack understands, but they live a couple blocks down and he always waves and yells to me. His Mom asked one day what I did that made him smile like that and I told her. She said that always worked for them too...and he's very sweet with Tris. I'm not exceptional or wonderful, just experienced. Two things: Many fine and wonderful people cannot "take" the behaviors because for whatever reason, and try as they might to the contrary, they are VERY uncomfortable in these situations. And second, would anyone with input and knowledge have allowed Jack to go to a concert at such a venue?

So now I've thrown crap on almost everyone involved and I could throw a lot more at those of us who are parents/caregivers for not taking a tough stand, at social workers for not doing the same, and then not really knowing how to manage their charges, at "Decision Makers" for being so uninvolved and living in some kind of wacky Ivory Towers, at damn near everyone....which brings me to the last point. (Finally)

As I said before, some of us are not comfortable with the MRDD population living in our midst. We try to be understanding. Truth is we can't understand and we can't "walk in their shoes." We truly have no idea what it's like to be in their shoes. Most of the folks at the 'Cat and folkies in general are of a liberal bent and refuse to be bigoted. Just ain't right is it? I imagine Davey may fit that desciption, maybe not. But what I'm saying is that on this issue, it's OK to be bigoted. Doesn't make you a bad person. But do yourself, me, and all those special folks, a big favor and be honest with your bigotry. It's understandable. And parents/caregivers like myself have a lot easier time in working with you if you'll just say, "Geez Pat, I don't want to insult you, but kids like your son make me uncomfortable and I really don't handle the situations too well." GREAT!!! We'll make adjustments. It beats the hell out of pretending to be nice or shunning away or commenting later. This is not like the bigotry of race. True, I can't fully understand the (fill in race/ethnic group here) experience, but I can educate myself through books or just being out and about. My son cannot tell me what it's like to be him. He will never be able to tell me what it's like to be him. He will never write a book, give a lecture, or guest on "Oprah." I love him. He's the most special thing Karen and I will ever have in our lives. Be polite, be kind, be courteous....but be honest. We'll work it out if I know how you feel. If he bugs you, tell me...and tell yourself. THAT is the ONLY way to gain any small piece of understanding.


It's Okay.

Spaw-but in this case, Pat