Why talk about disability in rare spaces?

It is the 30th anniversary of the passage of the Americans with Disabilities Act (ADA). The ADA legally defines disability; it does not medically define the term: a person who has a mental or physical impairment that substantially limits one or more major life activities. The person doesn’t currently have to be disabled to qualify for being legally disabled. That person just has to have a record of having such a disability at one time.

Why talk about disability in rare spaces? Because it is so often overlooked. Especially when the narrative engages only toward the caregiver and parent experience of living with a child or loved one having the disability.

I have written about the topic of disability before, using this definition of disability:

Disability affects a person’s life activities and may be present from birth or occur during a person’s lifetime. It is an umbrella term covering impairments, activity limitations, and participation restrictions.

I do want to point out that many people who are disabled do not receive Social Security benefits or other support from the government. Referring back to the ADA’s definition, Social Security and other financial assistance programs will have and may have different legal and medical terms for what they deem disabled. Just because someone does not qualify for any assistance does not determine their identity as a disabled person.

The disabled life

Even 30 years after the passage of a law that aids in protection from discrimination for those living disabled, disability in a person’s body is still stigmatized by our current society that we still have trouble openly discussing what many of us live with and live besides.

Where a person resides geographically and whether their family background and culture accept their disability as a normal part of their existence determines acceptance in regard to how someone disabled lives as part of general society. This is something that differs dramatically across the United States and is most stigmatized in communities set apart for those living with rare disease.

Let’s start discussing the normalcy that may be many caregivers and parent’s child’s life: the disabled life. It’s okay to look ahead into the future of your child or loved one with a rare disease and figure out jobs, housing, and further care and finances. It’s okay to fight for disability justice in rare communities. Rare is part of a bigger picture when disability is openly accepted.

It’s natural. It’s human. Disability is a normal life.


About Rebekah Palmer

Rebekah Palmer is the author of two books published by Aneko Press: A Letter to my Friend and A Letter to Myself. She also has poetry included in the anthology Strength: Lives Touched By Cystinosis. She is a rare disease news curator for her blog Cystinosis Society. Visit her author profile on Goodreads and her author page on Facebook called Jairus Daughter to ask any questions or to reach out.

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