Monday, February 18, 2008

Disabilities and Quality of Life

Well, my night's was alittle rough since the side effects from my avonex shot for multiple sclerosis were affecting me. This does not happen very often but it did last night. Therefore, I could not sleep and thought about a few issues I have seen in the blog in the past few days. There were some interesting provoking thoughts out there which have triggered some deep thoughts in many of us. This is not my first time dealing with this since I have been dealing with this ever since I was a child, from a "disability's perspective" and I often raise this question "Who define my own quality of life?". I have learned that in the Deaf culture, their definition of quality of life and ASL and how they have relationships in terms of communicating regardless what others (i.e. experts) think or believe.

I want to start with one of my quotes I have made in my journals:
“Okay, I have hearing loss and multiple sclerosis, and those are the ways of life for me that I cannot change them. I can live with them. I take silence and pain as come and I have learned master them in my life. My disabilities do not have me. I have the disabilities and I accept them because I know who I am from the inside. Everything has its wonders, even silence and pain, and I learn whatever disabilities and difficulties I may be in, I am happily content.” I like this quote by Canadian Mark Pickup (disabled with multiple sclerosis): “I have been more service to God disabled than during my able-bodied years. This didn’t happen despite my disability but because of my disability.”
In my own experiences, the government, the so-called experts, as well as society still have physical and societal barriers inhibiting fulfillment of quality of life for those who are disabled.

Many experts and people often treats disabilities as 2nd or 3rd class citizens as for finding ways to "cure them" rather than helping them with their disabilties. We live in a world which places great emphasis on beauty, wealth and power. People with disabilities are often a symbol of the opposite – they struggle with physical or mental imperfection, powerlessness and often poverty. This only adds to the stigma which isolates them, separating them from the mainstream of life. This fix or cure is a form of discrimination is a problem faced by disabled people including children around the world.

We need to have a solid and sound concept to understand disabilities and how those with disabilities can enjoy quality of life. People with disabilities are God's best visual aids to demonstrate how they treat those with disabilities.

What exactly is "quality of life"?

What is really the true definition of "quality of life"?

In terms of quality of life, many people took on other meanings such as "satisfaction with life" or "as good as someone else's life."

Now we are dealing with "quality of life from society's perspective" and "quality of life from the individual's perspective who is disabled".

To really understand "quality of life" is to effectively use knowledge and technology to improve the quality of life of people with disabilities requires understanding the many meanings of disability and of quality of life. What can we do to make a difference in the quality of life for those with disabilities?

Therapies and rehabilitation services will always improve the quality of life by helping clients become productive citizens or live independently.

The real key is:
"How and what kinds of therapies and rehab" can help? From a non-disabled perspective? Or from disabled perspective?

Often, I noticed that there are some rehabilitation efforts may increase functioning but not improve the quality of life. There are areas that are still facing barriers in one form or another. Improving the material quality of life, improving public safety and security, improving education, Christianity and spiritual values, increasing employment or improving work conditions for those who are truly disabled, improving the cultural quality (i.e. Deaf Culture) of life, improving the psychological and social quality of life and much more.

I am sure this discussion will be on-going for the rest of my life. LOL

6 comments:

Casdok said...

Yes i am sure you are right!!
An interesting post, and you bring up many good points.

whimsical brainpan said...

Another excellent post!

Maybe someday in our lifetime someone will get it and work it out so that programs are helpful rather than a hinderance.

Synchronicity said...

these are the essential questions aren''t they? i think that the govt. would define quality of life...by cost. an expert may define it by indicators of independence. but...the most important definition would come from the person themselves.

what answers have you come up with thus far?

Unknown said...

Hi Merelyme, the answers I came up are basically that I wanted to be loved and accepted unconditionally means placing no conditions on how I be fixed or not in order to receive acceptance and love from my parents or anyone else. I had that from my mother and some of my family members. They were not trying to fix me but they were dealing with experts who thought I needed fixing.

I have learned that by doing of the will of God leaves me no time for disputing about His providence plans and why things are happening to me. Everyone have their own definition of happiness. There are people who are not happy simply because they are not happy for whatever reasons since there are sources of "happiness". Happiness and content are usually from within.

Like my wife reminds me that I am who I am. She don't want me fixed because she wants me to be whatever I wanted to be. She took me with my flaws and who I am without trying to fix me. That's the love I have been looking for. I didn't get that from my first marriage. I don't get that from friends who I had been with in the past. My wife will be with me however my body will change or not (i.e. MS gets worst and/or my hearing gets worst). For better or worst.

I have many acquaintances but only very few are my true friends who accepted who I am.

I guess this is probably the burning core of my main frustrations for many years as a child and teenage period. When I became an adult, I took actions on my own and did what I need to do to make my self independent and happy as "I see" in terms of quality of life.

Deb Ann and Hannah said...

Excellent post, indeed! ;)

Lisa Emrich said...

Jim, I really enjoy when you share like this (although I haven't 'known' you for long.) I read something the other day on another blog (in the comments) that has me a little puzzled. Maybe you can help me understand.

A person expressed that she prefers the term 'differentially-abled' to 'disabled.' It seems to me that people can change the words used to describe something all they want but that the situation remains the same.

Maybe I don't really understand because the only thing which reminds me that I am 'disabled' is my much appreciated 'handicapped parking placard' if I'm having one of those days.

What is your option on 'differentially-abled'?