Maggie Dee: Disability Leader Can't Be Kept Down
By Janine Bertram Kemp
Maggie Dee, the California media maven, has earned her
stripes as a member of the disability rights community. 
In 1983, she sustained a spinal cord injury in a car
accident. In 2000, her wheelchair malfunctioned and propelled her out of a van
when the ramp was up, leaving her with a head injury. In addition, she was born
dyslexic, which left her struggling in school and facing disability prejudice
at an early age.
Like many disability leaders and activists, Dee made
lemonade out of what many of the non-disabled view as lemons. She is a deejay
for what may be the longest-running disability radio show in the country. The
program, which airs on KUSF 90.3, began as a monthly broadcast 26 years ago and
went weekly in 1998. Along the way, Dee has interviewed many of the movers and
shakers in the disability rights movement, including Ed Roberts, considered the
father of independent living.
In 2007, though, illness and pestilence descended on Dee
as if she were living the biblical tale of Job. First, she came down with
Methicillin-resistant Staphylococcus aureus. MRSA is a virulent infection that
does not respond well to medications. It is often contracted in hospitals.
As Dee described it, “I had it for 22 weeks, and it
gave me 44 boils where the sun don’t shine.”
In September 2007, her doctor discovered she had anal
cancer, and 35 weeks of radiation treatment was later recommended.
“I totally lost my center," she said.
A specialist told Dee that if she did nothing, "You will
die within two to four weeks, vomiting stool.”
Dee endured radiation treatment five days a week for seven
weeks, except when the burns were too severe and she took four days off before
starting again. The pain and discomfort were intense. She took Sitz baths five
times a day and was on morphine and Norco patches.
Finally, at the end of 2008 she got the all-clear sign on
her cancer. Then she had a heart attack. How, she was asked, did she endure so
much?
Concerning her MRSA diagnosis, she credited her personal
assistants. “All the cleaning and isolation -- if not for them, I
wouldn’t have survived.”
Thriving through anal cancer was more involved.
“During the two months before treatment, while I was
finding my center, I could not make a decision," Dee said. "I took a journey to
Fort Cronkhite. (Fort Cronkhite is a former World War II military base located
in the Marin Headlands on the Pacific Ocean.) A good friend of mine had cancer
and had passed away. She was a Buddhist and (practiced) some Native American
spirituality. I freed her spirit at the beach. As I freed her spirit, the
answer came to me that I needed to do radiation.”
Dee lives in Contra Costa, about halfway between the Bay
Area and Sacramento, so only about 10 people visited her. But people responded
in other ways.
“I put out that I had cancer on ADAPT and Berkeley
listservs," Dee said. "There were lots of cancer survivors that asked what I
needed to support my decision. Music was beneficial. So were biofeedback and
nature sounds. I asked for CDs and received all kinds of help from the
community. I was scared by some of the horrific stories but still grateful
because they were real.
“The cancer institute at (the) John Muir (Medical
Center) had no accessible treatment room," Dee said. "The accommodation they
made was examining me on a gurney and then taking me in on the gurney, so it
was not impossible to get on the radiation table.”
She explained that she survived through support from
cancer patients and from a mix of people. People with whom she had no personal
relationships embraced her. They sent her books and tapes, prayers and good
wishes.
At one point Maggie was worried about funeral expenses. A
dear friend, Liz Figueroa, former California state senator and legislator, came
up with a solution that seems quintessential California.
“She thought she wouldn’t live very long, and I
asked what I could do," Figueroa said. "Her friends all wanted to chip in, so
we had a bon voyage party. Everything was donated, including the Alameda County
Fairgrounds where it was held. People volunteered. There was music, dancing,
and many wheelchair riders and disability activists.”
To Figueroa, the overwhelming response of donations was no
surprise.
“Maggie is a unique blend of spirituality, common
sense and feminism," she said. "She has gone through a lot in her life. She
could be a bitter woman, yet she still loves life. She has a great capacity to
love others, and she gives more than she gets.”
For others who receive a diagnosis of cancer, Dee has this
advice: “Give yourself time to panic. The bottom line is when you hear the
word cancer and it is attributed to something in your body, panic is
appropriate. Then ask every question, go to everyone, and get the truth about
cancer so you can make informed decisions. If you pray, pray. I welcomed
everyone’s spiritual interventions: Buddhists chanted, witches circled,
Native Americans did ceremony, Mormons prayed.”
Besides working as a deejay, Dee calls herself a
background worker in the California Democratic Party’s Executive
Committee. Marta Russell, Maggie’s longtime friend, disagreed.
“I don’t know what we would do in California
without her," said Russell, a Los Angeles activist and author of "Beyond Ramps:
Disability at the End of the Social Contract."
"Just about every piece of legislation that gets
considered by the (state) Legislature, Maggie watches. She’s been active
in pushing the strongest disability agenda possible. Personally, I admire her
for her interest in and focus on issues that have to do with poor disabled
people. It is important to her that people remain out of institutions and that
they have the support systems needed to do that. She knows what’s
available is too little and keeps people living below the poverty level. Maggie
is committed to stopping further decreases in people’s quality of life.
She has developed lots of contacts.”
Many of those contacts in the California Legislature and
disability community came through for her during her cancer diagnosis and
treatment. Patrick Connolly, a Bay Area disability rights leader, took over the
radio show while she underwent radiation.
Dee is back to handling two-thirds of her radio shows,
with Connolly handling the rest. As an online advocate, she has resumed full
duties on a number of disability rights listservs.
Dee "is one of the strongest people in terms of her own
character, in terms of her inner strength,” said Marta Russell. “She
is far beyond average. She is someone without a victim consciousness. She is a
fighter.”
Janine Bertram Kemp, a writer and disability rights
activist, serves on the board of Disability Rights Oregon and is a member of
ADAPT. She lives in Mt. Hood, Ore. |
