Sunday, October 29, 2006


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