What Are Eight (8) Disability Related (Optional Or Mandatory) Items That You Want In Your Life?
Posted: May 5th, 2011 | Author: | Filed under: Common Questions | Tags: Disability, Eight, items, Life, Mandatory, Optional, Related, Want | 8 Comments »What are eight (8) Disability related (Optional or Mandatory) items that you want in your life?
Here is a list of Disability related items that I want in my life.
1. My Supplemental Security Income (SSI)
2. My Medicaid
3. My Permanent Handicapped Parking Space State Permit (PHPSSP)
4. My 4-Wheel Handicapped Power Scooter (PMD-POV)
5. My Power Wheelchair (PMD-PWC)
6. Disability Support Groups
7. Disability Literature (Books, Magazines, Newsletters, etc.)
8. Disability Related Internet Websites (Email Lists, Message Boards, General Disability Websites, etc)
What are eight (8) Disability related (Optional or Mandatory) items that you want in your life?
*Both me and my only child are SSA Registered-Certified-Recognized Disabled PWDs.* I am also a Registered-Certified-Recognized Member of the Ectodermal Dysplasias International Registry.* I am also a Registered-Certified-Recognized Member of the National Foundation of Ectodermal Dysplasias* — *I am proud to be a “Gimp”, a “Crip”, a “Cripple”, a “Capper”, a “Wheelie”, a “Wheeler”, a “Freak “, and a “PWD Freak”!* — *AFO WC PMD PHPSSP RCRMEDIR RCRMNFED MLRCRD SSA PD-PWD*—*PWDRHIP*—*Wowasakeikcupi! * Creator-Originator of the phrases of – Pulling PWD Rank – PWD Insiders Language – Person With Disabilities Rank Has Its Privileges – PWDRHIP*.
COMPETANT medical care….
I have been trying for over 11 years…There are only 2 doctors within an hour of me that actually have a clue. One does not take insurance at all. The other does take Medicare, so I have to wait until June when my medicare starts. But he is in a big city in the next state with notoriously borken elevators for the subways–so I can’t take my power chair..I have to have someone help me with the manual chair and push me. There is a 3rd possibility about 40 minutes from me, but he did not take my current insurance, but will take medicare traditional).
I have only found 1 PCP who will actually pay attention. He admitted he doesn’t know much aboutmy disability, but is willing to learn….he’s better than the ones who think they now everything when they are ctuay clueless.
The internet to do my own research since the doctors are clueless.
1- wheelchair accessible bathrooms wherever I go (properly designed ones where you can actually close the door and grab bars in a useful place).
2- ramps/no stairs wherever I would like to go.
3 – wheelchair cushions that prevent decubiti, have covers that are easily changed and not too expensive, and don’t bottom out/get a hole in them, at least not for a long time. And also correct my pelvic tilt (spasticity has pulled my pelvis more to one side than the other).
4 – a wheelchair that could prevent my feet from constantly coming off the foot pedals and help keep sitting posture straight and also be easy to disassemble when getting out of a car (I have a hard back on the chair that has to be removed before the chair folds up).
5 – easy to use, frequent, accessible, public transportation everywhere
6 – airplane bathrooms that are easy to get to and use in a wheelchair – or – A catheter that I could wear for long trips that does not leak, get clogged, get pulled out, with a bag that can be easily hidden.
7 – no high counters anywhere so I don’t have to crane my neck and the employees can always see me.
8 – curb cuts at every corner, all smooth, none too steep and none that the chair can get caught on and send you flying.
1. My wheelchair – manual, fold-up, no handles
2. My sports chair
3. My daughter’s wheelchair
4. My standing frame
5. The pram that fits to the front of my wheelchair
6. Easy to climb kerbs
7. My painkillers
8. My adapted car and blue badge
1. SSI & Medicaid for my children
2. Inclusive education, including higher ed opportunities for my children
3. An enforced ADA
4. My scooter
5. My hearing assistance devices (not hearing aids)
6. An accessible home for myself and my parents
7. An accessible vehicle (I don’t have this.)
8. Disability community (ADAPT, Not Dead Yet, Society for Disability Studies, Disability History Association, FRIDA, VSArts, and so many more.)
2 legs and arms
Ok…well here it goes. Sorry if I get a little harsh…
1. Normal priced hearing aids so I have a chance of not looking like a dork in front of my friends and family when I have to ask them to repeat things a million times/write everything down for me. Preferably one that has that thing that makes tinnitus less annoying.
2. Doctors that aren’t morons (again, sorry for harsh tone, but it’s true where I live) and that aren’t like 3 hours away from me.
3. A day where I’m not constantly teased for my hearing, especially when they call me deaf! I’m NOT deaf yet, people! Seriously, just because I don’t get everything you say doesn’t mean I’m stupid or deaf! Just speak slower and clearer people! (Sorry, I’m ranting again)
4. Something to make the bones in my ears stop fusing together (hopefully without surgery).
5. A “magic pill” that makes every health problem go away forever.
6. A class near me that teaches ASL so that I can learn better and talk to more people without saying “Huh?” all the time.
7. Some sort of FM system for places like church.
8. People in my area who understand me and don’t ridicule me for my “special abilities” (i.e. disabilities – man I hate that word) or better yet people who are facing the same problems as I am.
9. Something that makes my joints stop hurting.
10. Items like pencils, hair brushes, cups, toothbrushes, etc that don’t hurt my hands when I try to use them. And also something that lets me type without giving me a lot of pain.
Sorry…that’s 10, but I could list so many more! Personally, I love number 5!
Just simple things like :
1.NO ICE where places I’m trying to walk
2.Elevators in ever building (especially colleges!)
3.No hills
4.Handicap accessible doorways,houses,schools,etc.
5.People to not be so rude to me & others who have disabilities
6.People to NOT park in handi-cap parking spaces that don’t need it
7.For people to understand disabilities better
8.To be invited places (this is kind of personal- a lot of people don’t bother inviting me places because they don’t think I can, probably can’t but an offer would be nice)
I have SMA. I also have severe scoliosis ( I know it doesn’t count as a disability but it make walking even more difficult with the SMA) Guess I can’t complain too much though, I can walk.
1) A website specifically for support of YOUNG disabled people.
A teacher that will actually let me use a tape recorder ( I can’t write )
2) A cane I can use and not get made fun of by other teens. (Best I’ve found is a pink one)
3) My Permanent Handicapped Parking Space State Permit
4) A School system that is TOTALLY unbiased towards disabled. (My school is mercilessly prejudiced)
5) My Disability Income!
6) Better self esteem (It IS TO related)
7) A decent and easy to enter shower system.
I am so glad that I found this section!