Barriers faced by people with disabilities are often not understood by those who are not disabled; living with dignity, respect, and independence is a daily challenge.
An important but less obvious barrier is the use of inappropriate language; words such as “lame,” or “retarded” remain in popular use. Disabled people are among the last minority groups where discrimination and inclusion are under-recognized issues.
Drafting SB796 “An Act Concerning the Use of Respectful and Person-First Language” (PFL), the state attempts to encourage the use of respectful language. Though there are nearly 400,000 disabled people living and working in Connecticut, this draft legislation was drafted using input received from consumers of the Department of Developmental Services (DDS).
With an infinite range of disabilities, the broadest range of opinions should have been sought. One in five people is disabled and at some time in their lives most Americans, if not disabled themselves, will know a disabled person.
As Stephen Mendelsohn of Second Thoughts CT said, “PFL separates a person from their disability …although done to acknowledge personhood… it implies that “disability” is a derogatory word. PFL buys into the stigma it claims to fight. Disability is a state of being… not a dirty word.”
Christopher Blake, disability rights advocate said, “Disability doesn’t define me. I’m defined by how I conduct my life. Unlike a physical disability, a developmental disability can be invisible. When people learn that someone has an intellectual disability, they often view that person as “less than.” If I’m identified as who I am instead of what I have, I can prove myself before I’m judged. Everyone has preferences about how they want to be identified. There’s no bill or law that can satisfy every person.”
Disability rights advocate, Cathy Ludlum said, “The disability community is large and diverse. We don’t agree on everything, but we do agree on “Nothing About Us Without Us” the principle that decisions affecting us should not be made without our input. Language affects attitudes but imposing person-first language on populations that reject it is disempowering.”
When matters of public policy concerning the lives of disabled people are established, people from a cross-disability population should be involved. “Nothing about us, without us,” came from the independent living movement of the `70s which lead to the passage of the Americans with Disabilities Act.
Extending the discussion to the current budgeting process, though Connecticut’s legislators and citizens may be sympathetic, they may not be fully informed about the lives of people with disabilities. This was obvious during the state budgeting process when funding for agencies that help disabled people to remain independent was slashed. These agencies save the state significant money.
Connecticut’s five independent living centers help hundreds of people leave institutions every year. They provide support and advocacy to hundreds more and are currently funded at $202,005 annually after last year’s budget reductions. This is just $40,401 per center. The proposed FY17 budget zeros out all funding. Once again, disabled people are erased. All the correct language in the world will not compensate for the devastating impact of such cuts.
If this budget passes, it will cost the state more as people are driven back into institutions. People with intellectual disabilities, aging out of the school system won’t have access to day programs and residential supports and their parents will need to leave their jobs; this will cost the state budget and its economy. Cutting supports for people with mental health issues will increase the rate of hospitalization, a greater cost to the state and an immeasurable cost to Connecticut citizens and families. Even more disempowering will be the loss of services and supports that make it possible for many people to live independently in the community.
These are tough times and tough decisions need to be made. Nonetheless, putting resources toward human dignity, growth, and independence is a wise and necessary investment.
When matters of public policy concerning the lives of disabled people are established, people from a cross-disability population should be involved. “Nothing about us, without us,” came from the independent living movement of the `70s which led to the passage of the Americans with Disabilities Act.
Keith Mullinar lives in Windsor and is an advocate for the disabled.