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In at least one way, disability issues are the same as any other issue. Facts and details are important, but they don’t explain the full range of debated approaches and priorities. Powerful narratives are also involved … some truthful and drawn from genuine, lived experience of disability, others dishonest or based on fear and prejudice.
The increased prominence of disability issues in the 2020 Election campaign makes understanding these narratives more important than ever.
Here are four disability issues that are getting some attention right now, along with suggestions about the competing disability narratives that lie underneath the facts, assertions, and arguments of each one.
1. Social Security Disability and SSI
While Social Security itself is in general highly valued by people with disabilities, most agree that its disability programs are long overdue for reform. But disabled people, and others who look closely at Social Security, have vastly different ideas of what, exactly, needs to be changed. There are currently two dominant models: to narrow eligibility and serve fewer people, in order to preserve the program for the disabled people who “really need them” … or, to significantly expand and extend benefits, specifically by allowing disabled recipients to work, earn, and save a lot more than current rules allow, ultimately making disabled people more financially secure and fulfilled.
These two very different ideas of Social Security Disability reform are at least partially animated by two very different narratives:
Social Security Disability’s finances are out of control. Social Security is an important program, but it is threatened by cheating and lax eligibility standards. Too many people who aren’t really disabled are able to collect Social Security. This puts “truly” disabled people at risk of losing benefits someday if the program goes bankrupt.
Or ...
Disabled people should be able to work and save without losing benefits. Social Security is financially essential for millions of disabled people. But its current medical and financial eligibility rules trap disabled people in poverty. Fear of losing benefits deters many disabled people from even trying to work, and when they do work they have to worry constantly about crossing arbitrary thresholds and losing benefits. Benefits are too low in general, and rules should be changed to allow disabled people who become able to work to work longer, earn more, and save more money without losing benefits.
While these two narratives lead to opposite proposals, it’s interesting to note that they each look at a quite different “problem” with Social Security. Driven largely by the first narrative, the Trump Administration has proposed changes that would increase the frequency of Continuing Disability Reviews, in an effort to cut social security rolls and spending. Meanwhile, Presidential candidates Pete Buttigieg and Elizabeth Warren have both put forward plans to solidify benefits for disabled people who work.
2. Long Term Services and Supports
People with disabilities who need ongoing help with basic everyday tasks … like bathing, dressing, going to the bathroom, cooking, housekeeping, or just moving around ... usually rely a variety of services broadly known as “long term services and supports.” But while in theory these services belong to a single category, serving a single basic purpose, they actually differ a great deal. Long term services and supports in practice tend to reflect one of two different sets of priorities: health, safety, and control … or freedom, self-direction, and integration.
Details of each person’s services and choices typically involve a unique and personal combination of medical, practical, financial, and administrative factors. However, trends and policies in these services are also heavily influenced by competing narratives of disability and long term care:
Disabled people need to be kept safe and healthy. Elderly and disabled people who “can’t look after themselves” are best served by medical professionals who can not only help them with physical tasks, but ensure that they live a safe, healthy, and well-ordered life. Nursing homes and similar centralized facilities are necessary and sometimes preferable, especially for people with the most severe physical and mental impairments. These facilities, when properly designed and run, can be decent options for people with the greatest needs.
Or ...
Freedom and autonomy matter for everyone. There’s more to life than safety and order. Some disabled people do need personal help with everyday tasks in order to live safely and independently, sometimes a lot of help. But, in nearly all cases, these services can be provided individually, in people’s own homes and communities, which is what most people would really prefer for themselves, rather than in nursing homes and institutions. The goal of these services is to enable each person to live the kind of life they choose, not necessarily the kind of life that eliminates all risks and makes others feel more comfortable. Plus, the top-down control habits of institutions tend to foster corruption and abuse in ways that more home-based, individualized services don’t.
These narratives seem to reflect almost exactly opposite values. However, in practice, safety and freedom aren’t mutually exclusive, and focusing on each person’s choice of services is one way to resolve the conflict. The Disability Integration Act is a bill in Congress aimed at ensuring that people who need long term care would have a real choice of where and how to receive it.
3. Mental Health and Opioids
Mental health policies and approaches to opioids are divided along strikingly similar lines. While there is broad consensus that we need “more mental health services” and strategies to “fight the opioid crisis,” what people actually mean tends to boil down to one of two different approaches: coercive treatment and more institutional “beds” for unwilling patients ... or simply more accessible, affordable everyday mental health services and addiction treatment for people who need and want them.
The key difference in policy approaches to these particular disability issues is whether the disabled people involved are viewed as suitable partners in finding solutions, or as fundamentally unreliable and incapable of rationally understanding their own situations. Roughly speaking, the two competing narratives of mental health and opioids are:
Mental illness and opioid addiction are frightening and out of control. Mentally ill people don’t understand or acknowledge their own problems, and need to be made to get well. Some need to be coerced and confined, and current rules make it hard to do these things. Opioids, which were once touted as a miracle cure for chronic pain, are in reality useless and harmful, and opioid users are addicts who can’t be trusted.
Or ...
It’s too hard to get affordable, timely help for mental illness and addiction. The main policy challenge of mental illness and opioid abuse is simply making sure people who need mental health or addiction treatment are able to get it when they want it. In both cases, it is mainly a supply problem, made worse by the unfair stigma surrounding these issues. Meanwhile, the new opioid proposals tend to ignore the fact that they are useful and even essential for at least some people with chronic pain. In both cases, coercion and confinement aren’t the answers.
These narratives help shape these issues in two different ways. In one, disabled people need to be acted upon, while in the other, they have a legitimate and necessary voice in policy-making. The challenge is to develop approaches to mental health and opioids that address disabled people’s right to mental health assistance, addiction treatment, and pain relief, without prejudice, and with a full recognition of basic human rights. This conflict is evident in the Intense criticism of Kamala Harris’ mental health plan, and in similar objections to elements of opioid proposals put forward by many of the current candidates for President.
4. Sub-Minimum Wage
Is the longstanding policy of allowing certain employers to pay some disabled workers to be paid less than Minimum Wage a necessary opening to employment opportunities for people with disablities? Or, is it an outdated and exploitative policy long overdue for repeal? Answers seem to depend on two vastly different ideas about disability and paid work.
Sub-minimum wage is better than nothing. People with intellectual and developmental disabilities, and some other “severe” disabilities, are paid less than minimum because they can’t realistically work in regular jobs. For these disabled people is about more than money. It’s about socialization, meaningful activity, and pride. Abolishing sub-minimum wage will only make them lose the jobs they have, making them worse off than before.
Or ...
Sub-minimum wage is fundamentally wrong. If it ever was justified, sub-minimum wage is long overdue to be abolished. Anyone who works for pay, committing their time and effort to do so, should be paid at least Minimum Wage. Disabled people experience enough poverty as it is, and the humiliation of being paid under Minimum Wage erases much of the purported pride they get from working. Plus, with the right support, people with intellectual and developmental disabilities are often a lot more capable in the workplace than even their families and closest allies are able to imagine.
The main reasons this issue isn’t already resolved are an understandable fear of change, a failure of imagination, and in some cases, the greed of employers who just want to preserve this source of cheap labor. Out of all the current disability issues, this may be the one closest to being solved. Presidential candidates Pete Buttigieg, Amy Klobuchar, Bernie Sanders, and Elizabeth Warren are all in favor of ending Sub-minimum wage, and some states have already done so successfully.
Conclusion
It’s tempting to simply split the difference and treat each of these narratives as equally valid, and the policies they lead to as interchangeable or fully negotiable. But that is hard to accept for actual people with disabilities. Our priorities often differ, and we each bring with us our own political and ideological beliefs. But disability policy is fundamentally polarized between essentially negative, fearful, punitive, and controlling approaches, and those that stabilize, empower, and free people with disabilities to live their own lives. Disability policy involves more than cold pragmatism. It calls on all of us to choose and align ourselves with powerful narratives of disability in ways that reflect our deepest values.
