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As we enter a new decade, we are seeing signs of improvement for people with disabilities, but we are also seeing negative trends that serve as evidence that we are heading in the wrong direction when it comes to disability issues and disability culture.
What will life be like for people with disabilities in 10 years? Will today’s alarming trends turn into frightening realities? Or will we finally achieve some of the breakthroughs in access, equality, and opportunity that we’ve been working toward for decades?
First, let’s consider three ways in which things are likely to get worse for people with disabilities in 2030, given current trends.
1. Category
The disability community is likely to become even more sharply divided than it is now along lines of race, gender, sexual orientation, between the “haves” and the “have-nots,” between opposing political identities, and between groups of people with different kinds of disabilities.
Disability is an incredibly diverse collection of experiences, including physical, cognitive, sensory, and emotional impairments and hundreds of specific diagnoses. And disability itself intersects with every other flavor of human experience and social identity. Nonetheless, the overall trend over the past 30 years has been for the disability community to unite wherever possible. Cooperation has contributed to historic progress, and these progresses have in turn served to reinforce the value of unity.
But even now, external threats, zero-sum games and unity mentality threaten to overwhelm solidarity, shared experiences and the desire for collective action. It would be tragic… tragic, but entirely possible, that the disability community (as it is) could once again split into camps that are hostile and resentful towards one another.
2. The sinister side of innovation
Advances in medicine and technology may make disability seem like something people can and should choose to fix themselves, further reinforcing stigma against people with more permanent, ongoing disabilities.
Many people, including people with disabilities, see innovations in medicine, technology, and health as hopeful opportunities to treat and essentially overcome disability itself. This is a key component of techno-utopianism, the belief that ever-advancing technology holds the key to solving our most challenging societal problems. And it is true that technology has contributed greatly to the liberation of people with disabilities, through better wheelchairs and prosthetic limbs, relatively inexpensive assistive products, and of course the computer and the Internet. Medicine has also contributed greatly to vastly improving the everyday health and lifespan of people with disabilities, conditions that once shortened their lives.
Unfortunately, the wonderful contributions of technology also encourage more problematic attitudes and sinister purposes. People who believe that any “disease” or disability can be cured with the right tools, treatment, or lifestyle tend to have a critical view of disabled people in general. And it’s not just about treatment. We are already seeing a surprising interest in removing disabled people from society altogether, through prenatal screening, a renewed interest in eugenics, and a more tolerant and sympathetic approach to assisted suicide. These threats may seem unrealistic and abstract now, but how will society view disabled people, who supposedly shouldn’t continue to exist in a world where there’s a shiny new solution to every problem, in 10 years’ time?
3. Return to the institution
Nursing homes, institutions and various other types of managed care “institutions” may once again be widely promoted and used as a solution to the needs of people with disabilities.
Much of the story about disabilities over the past two decades has been an effort on many fronts to move disability “care” and services away from nursing homes, institutions, and other centralized “institutions.” Instead, there has been a move toward enabling people with disabilities to live in their own homes on their own terms, receiving the services and supports they need individually, in their communities, and as far as possible under their own control. Disability policy has made great strides in this regard, benefiting physically disabled people, including older adults with age-related functional impairments, people with developmental and intellectual disabilities, and people with diagnosed mental illnesses. Given the fairly obvious individual preferences for greater independence and the relative cost-effectiveness of these models, continued progress seems inevitable.
But there seems to be literally no terrible beliefs or practices of the past that can’t be resurrected. Contrary to expectations from just a few years ago, there is renewed interest in defending and even expanding disability service models that emphasize institutionalization, control, protection, and segregation. Traditional nursing homes still receive lukewarm acceptance at best, but “progressives” are busy coming up with exciting new “community” and “assisted living campus” programs that are nothing more than luxury facilities providing the same segregation and control of the daily lives of disabled people that contributed to outrages like Willowbrook that sparked the anti-institutionalization movement. Outspoken advocacy for a full-scale return to institutions is becoming more common and acceptable.
Perhaps this is just a passing fad, a nostalgia for the “old way”. But it could easily become a real trend, a reaction to lack of funding, unpredictable circumstances and the occasional failure of more individualised models like home-based care. Moreover, misunderstood and fabricated economic pressures and fears that “bad things will happen” always threaten to overwhelm hopes and ambitions for independence. Will most disabled people be able to live independently in 2030? Or will we find ourselves back in closed institutions, wondering why we’re here again?
Now that we’ve identified some practical concerns, let’s look at three entirely achievable hopes for how life for people with disabilities might actually improve by 2030.
1. Health Insurance for All
There will no longer be any “entitlement” to full healthcare or long-term disability services and supports – it will be automatic for everyone.
Whether this means “Medicare for All” or some other hybrid model, the key is not just affordability, but stability. Today, people with disabilities must constantly worry about suddenly or accidentally losing their health insurance. Many of us rely on health insurance not only for standard medical care but also for assistive devices and home care. As a result, the constant need to maintain precarious eligibility affects every important decision we make, including whether to marry, whether to work if the opportunity arises, and how many hours to work.
Making health insurance “non-required” and providing full coverage for in-home care for all who need it would be more liberating for people with disabilities than the landmark Americans with Disabilities Act of 1990. Involuntary “institutionalization” would be made permanently impossible, and the true promise of independent living would be fulfilled.
2. Ending the poverty trap
Disabled people will be able to work, earn and save much more than they do now, without the fear of losing their support benefits.
Many factors influence whether a particular person with a disability works for pay. As we’ve noted, maintaining stable health insurance is both essential and complex. The same is true for other financial benefits like Social Security, food stamps, and housing subsidies. The same is true for the support services that a particular person with a disability needs to remain safe and independent.
Eliminating the financial disadvantages of working, or working more, would be a big step in the right direction for people with disabilities, regardless of their current ability or opportunity to work. Figuring out how to make this happen isn’t difficult in a technical or policy sense. Whether there is the political will to do it will play a big role in determining what life for people with disabilities will look like in 2030.
3. Accessibility is done
Physical and communication barriers in the workplace, businesses and transport will become almost unheard of.
It may take longer than we think for the ADA’s promises to be fully realized. Perhaps the legal and practical tools are already in place, and over time and through the natural process of repairing and replacing infrastructure, we will achieve the ultimate outcome of full accessibility by 2030. Or perhaps we will “step up” the effort (so to speak) through a combination of stronger mandates, stricter enforcement, and targeted funding.
Will we simply coast towards full emancipation, equality and the eventual elimination of substantial barriers to mobility for people with disabilities, or do we need something more, and can we get there within another decade?
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These two lists were informally brainstormed, not rigorously researched or categorised, and asking people with disabilities might give you very different predictions. However, these negative and positive predictions accurately reflect the pessimism and optimism that coexists among people with disabilities.
It’s also interesting that while all of the predictions in the Darkest Timeline list are social threats, the optimistic hopes are all about concrete policies. And the opposite could just as easily be true. After all, the disability community also faces numerous policy threats, but disability culture is more vibrant and supportive than ever before.
And yet, policy advances in tandem with social stagnation and decline are consistent with the disability community’s history. Our legal and policy victories have always tended to be several laps ahead of advances in society’s attitudes and beliefs toward disability. Major institutional improvements are often followed by backlash… and that may be what we’re seeing right now, and not just in the disability community.
What if both lists come true by 2030? What if the disability community achieves material victories but loses its unity and solidarity – its soul? What if some of the disability community gains power, freedom and respect while the rest of us fall victim to rejection, shame and incarceration?
Of course, there is an infinite future for all of us. But the disability community has a unique opportunity to shape the world we live in in 2030. We need to be clear about what we want, what we are willing to do to get it, and what we won’t do. Now is a good time to think hard about that.