Sunday, October 29, 2006

Chaos

Photo of Jay's Grandma's plaid chair

Life has been chaotic lately, explaining the lack of posting in the last few months.
Moving across the river has been exciting. Where we're living is great, although we're just now finally getting completely unpacked.

Grandma had a stroke and has aphasia. Grandma also has post-polio syndrome, and has arthritis and a blood disorder, so she's taught me a lot about living with disabilities.
The process of walking through this with my family has been illuminating. Lack of information on part of medical staff, lack of technological familiarity, ageism, ableism, and other people's unmanaged/unacknowledged disabilities converge in a very different situation for people over retirement age who experience disability. It's the same disfunctional societal systems, but amplified and hidden.

I've been working as an Individual Advocate at a CIL for the last few months. Work is very challenging. I love being able to work with people's disability advocacy requests, especially when I'm teaching skills, facilitating communication, assisting to resolve conflicts, or showing people how to get through the system. Yet, it would be so much more effective if I didn't spend hours on the phone just waiting to talk to the hostile case worker or SSA. We're understaffed too, along with the dilemma of getting more referrals when you do a good job. But it's amazing to see things get resolved that seemed overwhelming and impossible. Yet, some of them don't, and I'm frustrated and angered by the lack of services/support that some people get left with. I can hope that they learned some self-advocacy skills in the process, and maybe one of the referrals I gave might have some better ideas, but ultimately there are still millions of people that are living without control over basic life decisions.

My new favorite blog:
Chewing the Fat

4 comments:

Shai said...
This comment has been removed by a blog administrator.
Shai said...

What has amazed me working with students is the number of them who don't realize they still have rights under ADA after graduation. Even those students who are excellent self-advocates seem to think that once they're in the workforce (or even in grad school) they suddenly lose all protections.

The person who runs support services here has done a good job of educating those students who come to see her BUT it seems as though something more large scale needs to be done. At any rate it still amazes me.

On an unrelated note you might be interested in my most recent update - http://wiboi.livejournal.com/

(Just be patient with the grammar, spelling and type-o issues. I don't tend to correct them when I update since it's just too much work- especially after working all day)

Jay said...

(Deleted comment is a copy of the 2nd, minus a paragraph)

Yeah, and then other students think that it's just the same as in high school, where they're suppossed to be protected and school is designed under IDEA that they are set up to succeed, rather than given the same opportunities to succeed under the ADA.

Intern-al Theology said...

Yeah, and then other students think that it's just the same as in high school, where they're suppossed to be protected and school is designed under IDEA that they are set up to succeed, rather than given the same opportunities to succeed under the ADA.

This is almost a magnified version of what happens to alot of people when they graduate (either high school or college) and enter the workforce.

The educational system - in ideal situations- works to encourage success. The work world is aimed at maximizing production regardless of the individual cost.