I never had direct contact with Barb Knowlen, but I’ve appreciated her work as I’ve come across it in in film and in the disability press. I also appreciated the posters from her “Barrier Breakers” that I encountered on the doors and walls of friends in the disability community. Many more knew her through her work in helping disabled people live above the poverty level without losing their Medicaid coverage and other benefits.
On her facebook page, which is now a memorial page, she described her work this way under “employment”:
Self Employed – assist people with disabilities in Social Security issues; write Plans for Achieving Self Support, most people I never meet, work over internet
You can get a better feel for what that assistance consisted of by visiting the archived copy of the “Barrier Breakers” website at the Internet Archive. Make sure to check out the posters that they used to offer.
For more about and/or by Barb Knowlen, check out:
When Billy Broke His Head – and other tales of wonder: Award-winning documentary by Billy Golfus, which Golfus says “ain’t exactly your inspirational cripple story.”
Maximizing Your Benefits was published in 2001 in New Mobility.
Finally, Mouth Magazine has a story by Barb Knowlen online that touches on concerns related to Not Dead Yet. The story talks about the fears that many disabled people have about doctors – who don’t value them, who won’t listen to them, and are too ignorant and arrogant to realize they could kill some of us through this combination of factors. In her case, it resulted in a very scary brush with a potentially lethal set of avoidable complications in the hospital:
PHYSICIANS ARE APPROXIMATELY 9.000 TIMES MORE DANGEROUS THAN GUN OWNERS.
Statistical proof: There are 80 million gun owners in the U.S., and 1,500 accidental gun deaths per year. There are 700,000 physicians in the U.S. who cause 120,000 accidental deaths each year.
It looks to this mathematician like doctors are approximately 9,000 times more dangerous than gun owners!
And who are they most dangerous to? Us, of course. People with disabilities, people who depend on medications, treatments, supplies, and attendant services just to survive — all of which have to be prescribed through a doctor.
Factor this in, too: people with disabilities get sick more often, and get a lot sicker than, people who are not disabled. And have less money to buy the best specialists, the most reputable doctors.
Too many of us don’t take the threat of dangerous doctors seriously. I didn’t.
I am a disability rights activist, with two decades in the independent living movement. I believed, preached, and lived the conviction that our lives cannot be defined by medical issues, that we cannot be controlled by doctors. I still do. But now I know how easily doctors can kill us.
Read the rest of Dr. Danger here.
The one consolation of losing vital people in our community is that they all leave us so much to remember them by. –Stephen Drake
My thanks to Laura Hershey for informing friends on Facebook of Barb Knowlen’s death and to Maria ‘Ria’ Strong for looking up the “Barrier Breakers” site on the Internet Archive.
I asked for help from barrier breakers and Barbara Knowlen did everything she could to help me. I will never forget her. She had such a way of working with you that you started to really believe anything was possible for a person with a disability like myself. She truly was one of a kind. She worked so hard to make sure that people with disabilities had the same opportunities that people without disabilities have. God Bless Barbara Knowlen.
Thank you for sharing this with us. As you say, she was one of a kind. She is remembered and keenly missed by many.