I know this isn’t a disability community only related problem, though the disabled community routinely gets marginalized. Some people with disabilities' voices never get heard. By ignoring the expertise of the patient, the country is wasting lots of money. How can preventive medicine truly work when a patient's voice is ignored? EVERYBODY has suffered from this at one point or another.
When considering these two situations think, why is the disability the #1 scapegoat?
Stop blaming the disability and keep your eyes out for double standards!
1. Marcy, who has a Intellectual Disability (ID) lives in a group home and is moved to another. She starts acting out and is hard to handle. Her support staff are baffled because she has never acted this way before. They try correcting her behavior by removing her daily activities. Marcy really enjoyed and looked forward to them. By removing them Marcy’s behavior got worse and terrible things happened.
- Turns out, Marcy did not like her roommates at the new group home. EVERYBODY has the choice of who they live with! Why didn’t Marcy?
2. Ivy notices she’s starting to have hip pain. She tells her power chair Durable Medical Equipment Dealer (DMED). Instead of listening, nothing is done. Time goes on and her pain worsens 100 fold. She is sent to multiple specialists. She is either sent home with no relief, or sent to another specialist. Over a course of a year, Ivy sees the same Physical Therapist (PT) about four times. The PT is arrogant and Ivy concerns are ignored. Ivy has had passive muscle stretching all her life. The PT refuses to stretch her.
- Ivy has had the chair for nearly a decade. EVERYBODY’s body changes with time. Even though there’s nothing wrong with the power chair, Ivy probably needs a new chair. (The PT recommend I go to a CHKD specialist. I ignored her for a change and saw a chiropractor. This will mark the second time I realized I’ll get better treatment if I go to a doctor that the general public uses.) There is nothing special about being “Special”. The chiropractor saw me twice a week until my hip was better.
* "Person-Centered Planning discovers and acts on what is important to a person. It is a process for continual listening and learning, focusing on what are important to someone now and in the future, and acting on this in alliance with their family and their friends" …. to improve quality of life.
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UPDATE: 2/13/16
My hip is much better. Though the pain has moved into my back.
I still believe this could’ve been prevented.
I have found nobody who specializes in aging with Cerebral Palsy. EVERYTHING is geared towards kids. Also attitudes toward an adult with a disability compared to children is different and needs to change.
I found an article that is for muscle strengthening. Which is what the PT refused to do.
All these exercises I remember from childhood. So what, are they EXCLUSIVELY for kids?
I started doing the hip extensors exercise and sit ups and they have helped tremendously. I continue to do the strengthening exercises from the Chiropractor.
But WHY "pediatric" and "rehab"?
What exactly am I rehabbing from?
Strength Training by Rehab Management
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