Diane Coleman, who holds a law degree as well as an MBA, uses consumer-directed home care services to maintain an independent lifestyle. The last few months, she’s found herself before local lawmakers across the country explaining a fact of life familiar to anybody severely disabled.
What the 61-year-old woman — who’s been using a motorized wheel chair for 50 years — has been trying to get across is the little-known, decades-long struggle of the disability rights movement.
A tedious state by state fight, supported by federal policy initiatives and a Supreme Court decision, has been waged to help disabled people receive help with the basics of self-care and vital everyday needs the nondisabled take for granted.
But now federal, state and local governments are cutting back on these services. Moreover, states like New York, Connecticut, Pennsylvania, Massachusetts, New Jersey, Iowa and California — following the lead of Oregon and Washington, are introducing so-called “assisted suicide” laws for those labelled terminally ill.
Coleman, president and CEO of Not Dead Yet, says people with disabilities are deeply concerned.
“Basically, the danger of medical mistakes and coercion and abuse are so great that it is not a good idea to create what amounts to a blanket immunity statute for those who would assist at suicides,” she told The Tidings. “Suicide’s not illegal. The issue is how third parties respond to someone who says they want to die.
“And what assisted suicide laws do is they create a double standard where some people get suicide prevention and other people get suicide assistance. But suicide assistance would never be provided except for the fact that they’re old, ill or disabled: ‘And we might agree that your suicide is rational and might give you the means to carry it out.’
“It’s really the ultimate discrimination.”
‘On the front lines’
Coleman says the backers of legally assisted suicide for the terminally ill often claim that opposing views from disability groups like Not Dead Yet aren’t relevant. She couldn’t disagree more: “While people with disabilities aren’t usually terminally ill, the terminally ill are almost always disabled.”
And her Rochester, N.Y.-based organization, formed in 1996, maintains the disabled and chronically ill live on the front lines of a U.S. health-care system that often poorly serves dying people: “The disability role in defeating these bills has increased in visibility and importance in the last few years as both media and various stakeholders have acknowledged our effectiveness. It is critical that our voice be heard whenever assisted suicide bills are introduced and considered.”
When it comes to judging who’s terminal (six months or less to live), she notes, as many others have, that medical mistakes are common. Physicians, including general practitioners, also determine if persons requesting assisted suicide are rational or if their judgments are impaired by depression or some other mental condition.
Proponents of assisted suicide, or “mercy killing,” often site intractable pain as the number one reason for enacting “death with dignity” laws. But Oregon doctors in 2013 reported the five top reasons for issuing lethal prescriptions were different: “loss of autonomy” (90 percent), “less able to engage in activities” (87 percent), “loss of dignity” (84 percent), “loss of control of bodily functions” (59 percent) and “feelings of being a burden” (38 percent).
Coleman points out that all of these are disability issues.
“I do know what it’s like to feel like a burden on others. I have had that experience,” she said. “Since I was 11, I’ve been in a motorized wheelchair with a neuro-muscular condition, which is not all that different from ALS or Lou Gehrig’s disease. But it’s much slower moving. And now I’m here at the age of 61. I do have some use of my arms and hands, but I don’t have normal use of anything.
“But, you know, that’s not really the issue,” she stressed. “It may surprise a lot of people, but it isn’t really about what a person’s physical condition is. It’s more about how you’re treated. Relationships. The same as it is with anybody.”
She says what can have a real positive impact on these disability issues is “consumer-controlled home care.” A worker visits the home to help the disabled person with dressing, bathing, going to the bathroom and other necessities, all under the direction of the individual.
“I use that myself, as do many disabled people to get help in activities of daily living,” Coleman said. “It’s not understood by the general public, and there’s no discussion of it, no required disclosures whatsoever in the Oregon law about consumer home care. And, certainly, doctors may be clueless about such things.”