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Struggle for Independence

Disability activist Ellen Bombero remembered

“Ellen passed away.” Even over the phone I could tell my friend was fighting tears. Just the day before, I attended the 10th annual meeting of Lane Independent Living Alliance (LILA). We talked fondly about Ellen Bombero and her role in its tumultuous beginnings.

Ellen Bombero

In 1998 after a couple of false starts, Gwyneth Van Frank and I put together a meeting of people with disabilities who were interested in starting some kind of peer-based group. We hoped that a Center for Independent Living would eventually evolve. Since I had worked at two CIL’s, I was tasked with explaining that a CIL was a peer-based, nonresidential entity that met the requirements of the Federal Rehabilitation Act: to provide, at a minimum, peer counseling, advocacy, independent living skills training and information and referral for people with disabilities. 

Ellen, a heavy-set bottle blonde who wore a large bow in her hair and had a propensity for pink clothing, was among the most enthusiastic participants at our initial meetings. An active volunteer in Eugene, Ellen was a familiar sight rolling around town in her pink poncho.

We all agreed that we needed something in Eugene. Two previous attempts at starting a CIL had failed and it didn’t take long to learn why. Our group was composed of longtime activists with strong opinions and the ability to express them aggressively. To say we struggled over our diverse ideas would be putting it mildly. Interminable meetings at the Hilliard center morphed into more lengthy meetings at Ellen’s house where we shrank into a core group (after scaring away anyone unwilling to endure our fierce debates), then in her building’s community room as we expanded again.

Ellen held us together. She helped us laugh at ourselves when we got too intense, made sure we had coffee and cookies at our marathon meetings and organized frequent get-togethers. Bringing new members to our group was one of her specialties. During our two years of grassroots struggle to create a viable nonprofit, Ellen always made sure that we had some fun and a few laughs to lessen the stress.

By the time LILA finally opened its doors in 2002, Ellen was our board treasurer and secretary. She was also the receptionist, office manager, organizer and social director.

In those early days people would wander into LILA and Ellen would find them something to do. Many kept coming back. Ellen used the savvy she had gained as a craps dealer in Los Vegas to make each person feel important and respected. She couldn’t accept a staff position because she received a small pension from Nevada after she fell out of a cherry tree and became quadriplegic, and the state in its wisdom wouldn’t allow her to work for pay. Even so, Ellen was at the front desk every day.

Ellen once told me that becoming a quad was the best thing that ever happened to her because she was freed from her abusive boyfriend. The physical aspects of her disability bothered her much less than the difficulties of staying independent with her level of disability. She was dependent on a caregiver (we call them personal assistants) for many of the activities of daily living. As is the case for many of us who lack the resources of a Christopher Reeves, the funding for a personal care assistant was insufficient to allow for true freedom. Ellen’s life was bound by the hours her assistants were willing get her up in the morning and put her to bed. She was lucky to find long-term employees who were usually pretty reliable. Other people with disabilities often complain about the high turnover of personal assistants who receive minimum wage from the state’s In-Home Support System (IHSS). Constant retraining of new employees is necessary and there is always the fear of being left without the necessary assistance. Many people on IHSS find creative ways to supplement their assistants’ pay from their meager benefits. 

 

Ellen lost her independence after a long battle with the state of Nevada that finally refused to pay for her caregivers, insisting that she move to a much more expensive long-term care facility instead. The LILA community rallied around her and offered to advocate, but Ellen was exhausted from her struggles for independence and we reluctantly agreed to support her decision. She moved to a facility in Albany and eventually to Portland where she succumbed to an infection Feb. 16.

Ellen’s story is an integral part of LILA history and also a justification for its existence. As long as people with disabilities are denied independence, CILs such as LILA will keep advocating for the empowerment, rights and freedom of people with disabilities. Ellen will be remembered as one of the unsung heroes of the local disability rights movement. She is a shining example of a person with a significant disability who helped empower and support others.

Ellen’s memorial will be at 11 am Saturday, Feb. 25, the LILA Peer Support Club at 10th and Oak in Eugene, Call LILA at 461-4057 for more information, or visit www.lilaoregon.org