News from Idaho SILC

Advocating for our Siblings

In recent months I’ve found myself in some unanticipated spaces, and I don’t just mean too many Zoom meetings from a hobbled together home office. As the executive director of the Idaho State Independent Living Council, I’m sometimes able to push my way into workgroups that may determine access for people with disabilities, such as who will get scarce medical resources during a pandemic or how access will be provided to public lands when parking lots are closed.

Advocates and self-advocates work hard to educate policy makers in the hopes that policy makers will do the “right thing.” As it relates to people with disabilities in Idaho, policy makers often seem to ignore what advocates say. They may ignore the gut-wrenching stories and data driven facts about everything from the importance of healthcare and community living to parking spaces and sidewalk access. Perhaps we’re working too hard to educate the wrong policy makers.

An advocate must educate themselves on laws such as the Americans with Disabilities Act of 1990, the Rehabilitation Act of 1973, as amended, the Fair Housing Act, Section 1557 of the Patient Protection and Affordable Care Act, the Air Carrier Access Act… The list is extensive.  Then, there are the regulations, state laws and reams and reams of policy.  Most of us didn’t plan to apply to law school when we got into disability rights; and most of us won’t go on to get that law degree. Further, and frustratingly, just knowing these laws isn’t enough to secure a parking space that Joe Public decides he needs for “just a minute,” or to get that scooter off the sidewalk when I’m late for an appointment, much less provide 

It’s exhausting to get accommodations in college when a person is neurodivergent or at work because a person has difficulty processing language quickly. Such battles last years, seemingly won, only to be reignited when a person goes to another school, starts a new job or gets a new professor or boss.  And what about our right to live in the community with the supports we need? How does the ADA apply?  Especially now when living in congregate care can be more of a death sentence than ever before?  Tell me Advocate – how will the ADA help us? Olmstead 1999. Lois Curtis and Elaine Wilson won the right to live in the community. The Supreme Court held that public entities must provide community-based services to persons with disabilities when

(1) such services are appropriate;
(2) the affected persons do not oppose community-based treatment;
and (3) community-based services can be reasonably accommodated, taking into account the resources available to the public entity and the needs of others who are receiving disability services from the entity. Yet here we are, 21-years later, still fighting for home and community-based services during a pandemic

How do we balance the law with the public good? How do we fight discriminatory policies that deny us health care and insurance coverage? How do we balance sharing our story with data driven facts to get the results we want? How do we secure our rights as Americans with Disabilities?

We keep suiting up and showing up. We speak up for all of our disabled siblings – not just the ones who can talk clearly or shout loudly. We show up for ALL of us. No matter the color of our skin, the perceived value of our lives, our socioeconomic background, our gender or gender identity, our religion or lack thereof. We show up when we aren’t as smart as most of the people in the room. We show up because no one else can speak our truth to power. We show up so our siblings can speak their truth to power. We show up. Because no one can speak up and show up like us. No one.