The concern begins, Tami Jackson said, with something so common that people may not recognize it: assumptions about what it means to live with a disability.
Tami Jackson says decisions about the end of life cannot be separated from assumptions about disability, access to care and the circumstances in which people live. (Submitted Photo)
Jackson, public policy analyst and legislative liaison for the Wisconsin Board for People with Developmental Disabilities, said those assumptions can affect how others perceive a person’s value, abilities and quality of life.
“Ableism is so normal it’s not noticed,” one of Jackson’s presentation slides stated.
That was a starting point for Jackson’s presentation during a Sept. 17 webinar examining assisted suicide and its potential effects on vulnerable populations.
“People with disabilities are not viewed the same way,” Jackson said. An able-bodied person’s perception, she said, can influence how someone views people with disabilities “in terms of their value, their ability to contribute, and the assumption about the quality of life they have.”
People without disabilities may imagine what it would be like to use a wheelchair, lose the ability to drive or encounter other limitations and focus on what they would no longer be able to do, Jackson said.
“We’ve built a world that is really for able-bodied people,” she said.
Jackson said people with disabilities often become aware early in life that others see their disability first, making assumptions about their intelligence, decision-making ability and independence. Those attitudes can extend into healthcare.
She cited research during her presentation indicating that 82 percent of physicians surveyed viewed people with significant disabilities as having a lower quality of life.
Jackson said those perceptions matter when a person acquires a disability or an existing disability becomes more significant. There can be an assumption, she said, “that their life is of less value, and perhaps even it would be better if they died.”
For Jackson, that makes the circumstances surrounding end-of-life decisions especially important.
“One of the challenges with these kinds of assisted suicide laws is there tends to be an underlying assumption that somebody is making an end-of-life decision based on their medical diagnosis and their prognosis alone,” she said.
“But that’s not how people make decisions. They make decisions based on the whole context of their lives.”
For someone with a disability, Jackson said, that context can include whether adequate care is available, whether family members can continue providing care, whether paid caregivers can be found, the cost of care and whether remaining at home is possible.
It can also include dependence on others.
Jackson said people with disabilities understand that reliance on paid or family caregivers can leave them vulnerable. Some can encounter pressure to make choices preferred by those around them.
“I’ve heard from a lot of people with disabilities that they are very acutely aware of how much they can ask for before it’s too much,” she said.
Another major concern is the availability of long-term care.
“We do not have the home and care infrastructure that we need. Period,” Jackson said.
She said the system relies heavily on unpaid family caregivers, who frequently fill gaps when paid workers are unavailable. Many have provided assistance for decades and are themselves growing older.
“We are hearing more and more from aging family caregivers, what is going to happen — if something happens to me — after I die?” Jackson said.
For people who depend on assistance to live independently, Jackson said, another concern is being forced into institutional care.
People with disabilities may fear entering a nursing home because they might not be able to return to their communities. They may lose the ability to work, come and go as they choose, or make everyday decisions independently.
“They know their decisions will be made or defined by the facility’s rules, and by the capacity of the staff that work there,” Jackson said.
Those realities lead back to the central question Jackson raised about assisted suicide.
A person facing serious illness or disability may be considering not simply a diagnosis or prognosis but a much broader set of circumstances.
“Are you valued? Do you have people who can care for you, who are willing to?” Jackson asked.
What happens when aging caregivers can no longer provide assistance? Is institutional care the alternative? Can the person afford the care that is available?
“These are all factors that do weigh into an individual’s decision,” Jackson said.
Jackson said people with disabilities view those questions against a history in which their lives and capabilities have sometimes been defined by others.
Her presentation ultimately offered a broader disability perspective on the assisted-suicide debate: Decisions about dying, Jackson said, cannot be considered apart from the circumstances in which people are living.
