Trending
The Maui Disability Alliance (MDA) is hosting its 20th annual Legislative Forum on Oct. 12 from 4:30 to 7 p.m. at the Wailuku Community Center, illuminating individuals who are "The Face of Ability."
As we gear up for our annual goals and elections, we welcome individuals who are challenged with seen and unseen disabilities to share their challenges, giving able-bodied people and our elected public servants an idea of how different and often frustrating life is in their shoes/wheels.
The MDA has been operating without local leadership all year. Week after week, we hope for a replacement to guide the way and organize our basic needs. Even without the coordinator, a few dedicated agencies and individuals have been meeting, donating their time to create another successful legislative forum. The empty seat is a clear reminder of the value of leadership and coordination and makes this forum even more special.
Meet Ellen. A UCLA graduate in theater, where she learned computer drafting and AutoCAD, Ellen underwent brain surgery seven years after graduating. Her training became a valuable educational asset, which transitioned her into her first job as a computer draftsman for a lighting designer for a TV show.
A few years later, she was diagnosed with multiple sclerosis. Her life continued despite these major physical obstacles. Still walking and driving when diagnosed, within three years she needed a wheelchair. Life in California was difficult and she managed. Eventually, her Maui family built her an ohana that was adapted to meet her needs and they encouraged her to move. In 2006, clinging to her life in California, she made the move, recalling, "It was a totally different environment moving from L.A. to Pukalani. I was barely managing in an apartment that was not adapted to my needs and did not realize how hard my life was."
The move provided clarity. "It was completely different having supportive family around. My place in L.A. was incredibly difficult." Now, her ohana is filled with stationary and fold-down grab bars she can use to exercise at her specific height.
"My ohana has seven grab bars in the bathroom, some are secured into the floor, there are some on the wall and some that have arms that provide stability so I can transfer well," she says with the enthusiasm of someone opening a present.
Even the roll-in shower bench brings excitement on how these small changes improved her mobility and independence immensely.
As a writer, I am struck by how positive her attitude is when you consider the amount of time it takes her to conduct her life, and yet she is infusing everyone around her with positivity. She has transitioned gracefully into a new rhythm and fully understands the value of having a supportive family, which is partly why she volunteers her time with those who are not as fortunate. So many others are without these circumstances.
Ellen believes "that a person can heal themself and you have to believe you can, seeing that there is a larger community of support out there that you can tap into and that even if it is just a self-help group that you can voice your concerns and get help from other people" tips the scale from disabled to abled.
She adds, "I think it would be nice to expand services for those without the basic accommodations," noting, "As for me, I'm in a good situation. If I knew there was a group that understood HUD with my disabilities to explain vouchers, that would be great. I don't know how to look up care-home options and agencies don't have time to do this. We need more coordinators who can share this information that are not struggling day to day to get their job done and then have to take this role on, also."
Knowledge is power and sharing knowledge is powerful. "I think it is so important to feel confident to deal with your disease," Ellen says.
This year's Legislative Forum is far from complete and needs the entire community to come together to share their knowledge and expertise to move the term disabled back into abled.
* Lisa Darcy is on the 2016 steering committee for Maui Disability Alliance, a consultant for Ho'omoana Foundation, a Hawaii Public Housing Authority board member, and the Maui Homeless Alliance Membership & Advocacy Committee chairwoman.