Surviving apprehension & anxiety: disability in times of turmoil

Posted by Michael Collins in Life After Paralysis on February 21, 2017 # Advocacy and Policy

There are moments in life that can make us feel as helpless as one of the specks of dust that find themselves sucked up and pummeled around in a vacuum cleaner, and this is one of them. A new administration, elected to pledge to undo everything in government, is following up on those campaign promises. So far it is difficult to determine if the welfare of people with disabilities will become a specific target, or simply collateral damage from the actions that are occurring.

Early indications are not good, as exemplified by a new Secretary of the Department of Education who is unfamiliar with the Individuals with Disabilities Education Act (IDEA) and a believer in promoting private education over public schools. Several other new appointees have limited experience with the departments they now head, and in some cases have even voiced a desire to dismantle them. If this trend continues, it is likely that millions of individuals who are disabled will be ignored, threatened or suffering when the dust finally settles.

Independent living is a worthwhile goal for all of us, but maintaining that independence requires two important things: our health and enough "wealth" to avoid the confines of institutions like nursing homes. Neither is assured in the current environment.

Healthcare was an early target of presidential executive orders that have been originating from the White House on a frequent basis. One of the most significant was an instruction to Congress to dismantle, or repeal, the Affordable Care Act (ACA). It appears that there is a lack of recognition of the importance of this law to millions of people who rely on it for health care that they might not be able to obtain--or afford--otherwise.

Other concerns include congressional and appointee promises to dismantle Medicaid by making it a block grant program administered by states. Should that happen, it is likely that some states will take the opportunity to discontinue optional services, like home health care that pays for the personal assistance services that allow people with limited income and significant disabilities to live independently. Similar proposals involve changes to Medicare which could affect more people with disabilities as well as retiring seniors. Items being considered include privatizing the program to include means testing so that those who are well off would pay more in premiums.

There are also people in positions of power who are considering cuts to all "welfare" programs, such as food stamps. Such subsidies for people who are disabled and unable to work include Supplemental Security Income (SSI) or, if they have worked previously, Social Security Disability Income (SSDI). Both programs have stringent eligibility requirements and neither pays a living wage. It is extremely unlikely that any of those wanting to cut these programs or reduce the size of payments would be able to live on the $733 SSI pays, which must last an entire month.

Fortunately for us, the disability community has the power to control its own fate, at least to some extent.

The secret to our success in staving off some of these negative proposals will be our ability to use alliances, whether with longtime allies or newfound friends. The same issues that concern us in the disability community are troubling or threatening to millions of other people, especially if they are marginalized or demographically "different." Recent demonstrations occurring simultaneously throughout the country awakened a movement that has been dormant for decades: the power of a nation of diverse individuals working together to create change.

It doesn't take much effort to sign up in support of one or more of the many organizations that are seeking to control or eliminate threats to the programs, laws, and quality of life that we rely on. In some cases, as with the Reeve Foundation, all it requires is clicking on a link. Doing that will result in being added to a growing list of advocates who receive updated information on how to make a difference with timely and coordinated actions targeting the elected and appointed officials who need to know why they should, or should not, take a particular action.

When millions of people speak out in a unified manner it is likely that those whose hopes for future employment will require a reelection campaign will listen, eventually. We need to be part of that collective voice by being visible at rallies and demonstrations whenever possible so that the rest of the concerned citizens in this country will recognize our concerns as well. If unable to attend in person, every call, e-mail or letter will also help.

© 2017 Michael Collins

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.