Disability Culture 101
Disability culture is richly diverse. When we refer to the “disability community” it may create a false impression of a homogenous or monolithic group, while the opposite is true. Disability intersects with every other form of identity to create a rich tapestry of human diversity. Our vision is that someday, the world will see and appreciate this beautiful tapestry and recognize that disability is a natural part of human diversity, not something to avoid.
Disability culture includes the words we use to identify ourselves, and there’s no one-size-fits- all. For many years, “people first” has been considered the gold standard of disability parlance. It is based on the premise that personhood is paramount and must be emphasized. Examples: people with disabilities, person with cerebral palsy, woman with an intellectual disability, child with autism, man with traumatic brain injury.
People first language was an important step away from outmoded words that are now considered offensive, such as handicapped, crippled, deformed, infirm or retarded. It accentuates the individual, not their disability. Instead of referring to a person as a “schizophrenic” or “diabetic” one would instead say woman with schizophrenia or man with diabetes.
However, a growing number of people prefer “identity first” language. It is particularly popular in certain communities. Examples include Autistic man, Deaf woman, disabled person. Some believe that “people first” language is unwieldy and unnecessarily downplays disability. To them, it is a matter of disability pride to “say the word.” Moreover, they find this terminology to be in keeping with the social model of disability, i.e., a person becomes “disabled” by inaccessible environments and discriminatory attitudes.
Identity references within the mental health community are particularly dynamic, with regional and personal preference variations. Some terms include: person with a mental health (or psychiatric) disability, diagnosis, condition or label; mental health client or consumer; survivor, ex-patient, or person with lived experience. Although often used, “mental illness” is increasingly falling into disfavor among people who have mental health disabilities.
Many people with disabilities dislike euphemistic terms like differently-abled, special needs and physically challenged. Objectifying language like “the disabled” (without being followed by a noun) is considered demeaning. Words like normal, healthy or able-bodied are inappropriate ways to describe a non-disabled person or person without a disability.
It is best to ask the person their preferred reference, and not worry about making a mistake. Interaction is key. It is also important not to use sensationalistic phrases like: suffers from, victim of, afflicted with, battles (a disability), etc. A person simply has a disability. Similarly, people are not “wheelchair bound” or “confined to a wheelchair.” They are simply wheelchair users.
The following are some tips for disability etiquette to assist in your interactions with disabled people. Don’t get hung up on memorizing everything. It is extremely rare for a person with a disability to become upset by someone who acts in good faith and makes an honest mistake that they want to learn to correct. It would be so much worse to avoid the interaction.
Presume competence – People with disabilities are the best judge of what we can do. It is great to offer help, but avoid helping without offering. For example, you could offer a blind person your arm to guide them, or to help a person with a dexterity disability in getting food from a buffet, or ask a manual wheelchair user if they would like any assistance getting up a hill.
Nothing About Us Without Us – Remember that the individual, whether an adult or child, under guardianship or not, has the right to full participation in decisions that affect them. Do not assume that family members, guardians or professionals who have been involved with the person know what is best. A pet peeve among folks with disabilities is when people interact with our companion(s) instead of directly with us. Make eye contact– smile even – and directly address the disabled person.
Assistive technology (AT) – People who use AT such as wheelchairs, walkers, white canes, scooters, etc. essentially consider their device to be an extension of their personal space. Just as it is not ok to pat a person with a disability on the head, it is not ok to lean on their wheelchair. Never touch or move a person’s AT without their permission. Assistance animals are working – never pet or interact with a person’s service animal without permission.
Hearing – When communicating with a person who uses a sign language interpreter, make sure you are facing and communicating directly with the Deaf person. If the person reads lips, speak naturally and ensure you are facing them without blocking your mouth. (Note that Deaf or Hard of Hearing are the preferred terms; “hearing impaired” is no longer considered acceptable.)
Vision – When meeting or speaking to someone who is blind or has a vision impairment, identify yourself before speaking. To escort a blind person, offer your arm instead of taking theirs.
Verbally note any upcoming obstacles in your path (stairs, cracks in the sidewalk, etc.) Offer to read information (menus, signs, etc.). It is perfectly fine to say things like “great to see you” or “see you later” when interacting with blind people – they use these common expressions, too. If you are leaving, make sure to let the person know.
Speech – Give the person your full attention and if you have trouble understanding them, don’t just nod and pretend, ask them to repeat themselves. Over time, you will find it easier to comprehend their speech.
Intellectual/Cognitive – Speak in clear sentences, using uncomplicated words and concrete concepts. Never use baby talk, speak loudly or otherwise “talk down” to a person with an intellectual disability.
Physical – Again, a wheelchair is part of the user’s personal body space. Do not crowd a wheelchair user and force them to crane their neck to make eye contact with you. For longer or more personal conversations, it is best to sit down in a chair if possible. Also, consider a person’s path of travel and reach. For example, push chairs under tables when you get up to allow others who use wheelchairs to easily pass through. Especially when tables or countertops are high, beverage service must be arranged closer to the edge, rather than placing items back against the wall and out of reach.
Mental health – Not only is there a tremendous range of mental health disabilities, different people with the same diagnosis can experience different symptoms that have different effects on their lives. Coping mechanisms also differ. Some people with a mental health disability may have trouble picking up on social cues while others may be extra sensitive. One person may be very high energy, while another may appear sluggish. Consider too, that a person’s behavior may be influenced by medication they take rather than their underlying disability. The main point is not to make assumptions based on diagnosis/disability. One of the main obstacles people with a mental health diagnosis face is stigma and people’s attitudes or unfounded fears. Treat each person with respect.
In all cases, be supportive in your interactions as you might with anyone. Encourage questions and open communication. Follow the person’s cues to ensure they (and you) understand what is being communicated.
Remember, a great many disabilities are invisible or non-apparent. One in five persons has at least one disability. You probably have disabled friends and colleagues without even being aware of it.
We are some of the most wonderful people you could ever hope to know! Be a great ally and celebrate disability diversity.
Virginia Knowlton Marcus, January 2020