Disabled learn to advocate for themselves

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By Merilee Dannemann

Being wheelchair-bound was just one of this woman’s physical limitations. She couldn’t use her arms. She could barely talk; her mouth would not form the words. Her caregiver had to wipe spittle from her face.
The device that helped her speak was a visual reader. An electronic display was attached to her wheelchair. She could select a letter of the alphabet by looking at it, and it would help her build words and sentences. I talked with her just a few times, resisting my impatience at the slow pace as I thought of how much patience her life required every day.
She had a doctorate in psychology. This is how far we have come in the treatment of people with disabilities.
New Mexico celebrated this progress recently at the annual Southwest Conference on Disabilities, an extraordinary event — now annual — that attracted an estimated 1,200 people, including visitors from 36 states and a few countries. The conference was sponsored by the Center for Development and Disability at the University of New Mexico School of Medicine.
The halls were dotted with wheelchairs, assistance dogs, white canes and vigorous conversations in sign language. I had missed the miniature ponies, the newest species used as assistance animals. Among the artists and craftspeople (all disabled) was a fellow selling hand-carved wooden canes.
The Americans with Disabilities Act was enacted in 1990. Americans learned that disability activists think of exclusion as a civil rights issue, in a broad range of areas — certainly more than just parking and accessible restrooms.
What’s a disability? An inclusive conference like this covers many kinds of recognized disabilities: blindness, hearing impairment, developmental disabilities and physical disabilities of all kinds.
A few prominent themes observed at this year’s conference:
Self-advocacy is a major topic. Individuals with disabilities, and their families, receive training on their rights and how to advocate for themselves. They learn to think of disability inclusion as a civil right, comparable to the rights of racial minorities and to demand inclusion accordingly.
Self-direction. If you need help with daily living activities, and you qualify both medically and financially, you are not forced into a group home. You can stay in your home and choose your caregivers, including family members if you wish, who are paid through a government program. A network of Independent Living Centers — several around the state — helps people who need to access services related to independent living.
Life choice. People with disabilities should not be barred from starting businesses. Access Loan New Mexico can help you purchase assistive technology, and New Mexico Seed Loans can lend you money to start a business at low commercial lending rates.
“YesWeCanNewMexico” is a membership organization that helps entrepreneurs with disabilities promote their products and services.
There’s an alphabet soup of government agencies and government-funded programs – confusing to the outsider and no doubt daunting to anyone negotiating the disability pathway for the first time. One virtue of conferences like this is that staff of all the programs spend a few days under one roof and get acquainted so they can do better at helping their clients navigate the system.
Mixed into the soup are divisions of the state Human Services, Health and Public Education departments, small separate agencies like the Commission for the Blind, and a plethora of citizen boards and commissions, each serving its special purpose. Why so many? The powerful message embedded in this administrative detail is that family members of individuals with disabilities are eager to volunteer, participate and advocate, reminding the rest of us that disability is not the measure of human value.
For information on contacts and future conferences, go to cdd.unm.edu.

Contact Merilee Dannemann through triplespacedagain.com.