SIT YOUR ASS DOWN!:BALANCING FUNCTION AND REHABI was born with a spontaneous genetic mutation which causes a skin disorder called epidermolytic hyperkeratosis (generically “Osteoarthritis is a bonus disability for me; it is unrelated to my original disability.In August 2008, I had total hip replacement surgery:The number one thing I was worried about, related to the surgery:This fear was reinforced by how they reacted when I tried to explain to nurses/therapists what the skin condition was.Hostility/fear in the face of a disability are 2 sides of the same coin.The paramedics that transferred me to the SNF did me a huge favor.On brief acquaintance, people often don’t (or can’t) listen very well to a person with a visible disability.I lucked-out with the physical therapists; they asked me what my goals were and respected my limitations.You might want to check out this Wiki definition and article about Occupational Therapy(ists): http://en.wikipedia.org/wiki/OcPeople with long-term disabilities are constantly problem solving:I bought this chair out-of-pocket, and used it in my house, before and after my hip surgery in Summer 2008. Best money I everI tried to get the surgeon’s office to order me a commode before the surgery, but the bottom line was –they didn’t know how, bSimilar story for this, a walker with forearm attachments. I could have used this at home pre-surgery, but couldn’t get anyonI had a DYI-handy friend put these special hinges on my bedroom door, to ease clearance for my walker (and wheelchair).I brought these with me to the SNF, along with a small pair of scissors – again, my adaptations, not suggested by “professionaKey Observations, Lessons and Immutable TruthsWhen you’re designing assistive technology, or trying to assist someone in your life with a disability, keep these things in mSIT YOUR ASS DOWN!:BALANCING FUNCTION AND REHABTeri A. Adams, J.D.Assistant Director,Office of Accessible EducationStudent Disability Resource CenterI was born with a spontaneous genetic mutation which causes a skin disorder called epidermolytic hyperkeratosis (generically “congenital icthyosis”) in 1957.This disorder causes the body to make skin cells too rapidlyThose skin cells don’t break down properly, so there is a lot of flaking and callusing of the skinIt also causes blistering anywhere there is a lot of friction, such as that caused by walking – it wasn’t until I was in my 30’s, however, before I got mobility assistanceI was in segregated “handicapped” educational programs until after high school (although I was mostly mainstreamed in high schoolOsteoarthritis is a bonus disability for me; it is unrelated to my original disability.Except that there was underlying hip dysplasia that probably accelerated the joint deterioration that no one identified – I think because they were too distracted by the skin conditionEven though I told my primary care doctor in 2007 that I was taking tons of NSAIDS for arthritis pain, he didn’t suggest an x-ray until May of 2008 when I insisted on getting a formal diagnosis of arthritisMost people don’t go from initial diagnosis to total joint replacement in essentially one office visit – which gives you an idea of how bad it was by thenIn August 2008, I had total hip replacement surgery:The number one thing I was worried about, related to the surgery:That physical therapists and nursing staff would hurt me physically because they didn’t understand my disability, such as:Try to make me do things in physical therapy that would hurt my skin“Manhandle” me and accidentally hurt me (in fact a friend of mine who is in medical school said “you wouldn’t believe how they throw you around once you’re unconscious – you need to tell them to be careful of your skin”This fear was reinforced by how they reacted when I tried to explain to nurses/therapists what the skin condition was.When I said “I was born with this skin condition”, they would nod, and then say, “so you’ve had it all of your life?” (I thought “congenital” was too big a word.)It would sometimes take 2 or 3 times before they would get that:My skin condition was completely unrelated to why I was in the hospital/SNFI’d always had the skin condition and they could trust my assessment of my present state in that regard (not that they had a clue about what to do in any case)Hostility/fear in the face of a disability are 2 sides of the same coin.When I was first admitted to the Skilled Nursing Facility (or SNF, where they send you for rehabilitation after getting out of the hospital) I sensed a pervasive hostility from the nursesOnly later did I realize that the hostility was based on their assumption (just by looking at me) that I was going to be a lot of extra work for them and they were already overworked and understaffedOnce I established that I was actually pretty low-maintenance, they liked me.The paramedics that transferred me to the SNF did me a huge favor.On brief acquaintance, people often don’t (or can’t) listen very well to a person with a visible disability.They take you from the hospital to the SNF in an ambulance. On the way, I told them about my skin condition, since none of them had ever seen anything like it. One of them was still in training; he was particularly interested in hearing about an unusual condition.In explaining my disability, I mentioned, among other things, how I was prone to overheating, because I don’t sweat – I can’t cool off properly.The first room the paramedics were directed to in the SNF was really warm, because my “roomie” was an older person who was cold all the time. The lead paramedic told the admissions person that they couldn’t put me in a hot room.So, they moved me into a room with a vacant bed next to the air conditioner.I really believe if I had just complained about the warm room, they would have given me less credence than they gave the 20-something paramedic.I lucked-out with the physical therapists; they asked me what my goals were and respected my limitations.You only get about an hour of PT a day in the SNF.They would also provide about an hour a day of OT – which I refused.You might want to check out this Wiki definition and article about Occupational Therapy(ists): http://en.wikipedia.org/wiki/Occupational_therapyI was able to run off OT that came to see me in the hospital in