Disability and Rare Neuroimmune Disorders
July became known as Disability Pride Month after the Americans with Disabilities Act (ADA) was signed into law in 1990. Although Disability Pride Month has been celebrated for over 30 years, many people still don’t know about its history and importance. Last month, SRNA’s Dr. GG deFiebre and Dr. Cyrena Gawuga discussed disability and rare neuroimmune disorders for an episode of SRNA’s “Ask the Expert” podcast. During the conversation, GG and Cyrena discussed the definition of disability and how rare neuroimmune disorders can be related to disability. The experiences of disability range widely across the SRNA community. Each person may have their own unique combinations of disabilities while others may not have any disabilities at all. Some of the terminology and definitions discussed in the podcast are included below. Visible disabilities are disabilities that other people can see. An example of a visible disability includes limb weakness where you need to use a cane or wheelchair. Invisible disabilities are hidden to the world. Some examples of invisible disabilities include limb weakness that impacts your gait that may not be as obvious to other people, or pain, such as neuropathic pain, that impacts someone’s functioning. There are different models or ways of understanding disability. These views can impact the ways people view disability. Most people tend to have the medical model in mind when they think of disability. The medical model focuses on the illness, the condition, the health status that impairs the person. Through this view, a condition, illness, or some sort of injury makes it difficult to interact with the world or it impairs the disabled person’s perceived inability to interact with the world. The social model views disability through the lens that society is structured in a way that makes it difficult or impossible for the disabled person to interact with the world. Adaptive transportation, getting accommodations at work, or moving through the world with reduced vision are all challenges for disabled people because of how society is structured. Adaptations and changes that make the world easier for disabled people to live their lives can make the world better for people who are not disabled as well. One example of this is curb cuts on sidewalks. Curb cuts help people with mobility disabilities with a wheelchair or walker, but they also help people with strollers or who have a cart – the environment becomes less disabling to those folks as well. In conversations about language related to disability, there are different views on person first and identity first language. “People with disabilities” is an example of person first language, while “disabled people” is an identity first way to express the same thing. When speaking about others, a good rule is to respect whatever a person prefers. Ableism is another term related to disability. Simply, ableism is discrimination against disabled people, which can occur in institutional or structural settings as well as on an individual level. The podcast audio, video, and transcript are available in the Resource Library. In the full conversation, learn more about… You can take action this Disability Pride Month, whether you identify as a disabled person or not. Reflect: What are some different ideas you have been confronted with or held around disability? Educate: Learn more about disability history by reading, watching, or listening to media created by disabled people. Amplify: Encourage others to learn about disability, support disabled voices, share the disabled pride flag, and continue to stay engaged all year long. Create: Consider how your events and gatherings could be designed to be more accessible.
