Money
Near-term hopes for an historic effort to raise and reform Supplemental Security Income, (SSI), and lift the lowest income disabled Americans out of poverty, seem to be fading. Very little of the Biden Administration’s bold initial SSI proposal has made it into the “final” “Build Back Better” deal, and passage of the bill is far from certain in any case.
Whatever the short-term outcome of this particular effort, disability activists and disabled Social Security recipients hope this new focus on directly raising disabled people’s incomes won’t falter.
You don’t have to dig very deep to discover what disabled people need more than anything else in order to live freer, more satisfying and independent lives. It’s money.
In his book “Vacationland: True Stories from Painful Beaches,” author, actor and humorist John Hodgman describes how suddenly making significant money from doing those famous “Mac vs. PC” ads in the early 2000s almost completely eliminated anxiety from his life. “Money cannot buy happiness,” he writes, “but it buys the conditions for happiness: time, occasional freedom from constant worry, a moment of breath to plan for the future, and the ability to be generous.”
This can be true for anyone, but it’s especially so for people with disabilities — in most of the same ways, but also in a few unique ones.
For disabled people, money buys health and adaptation, accessibility, help from other people, and the flexibility to either interact with the community or shelter ourselves from it. Money is often more effective for people with disabilities than almost any therapy, treatment, medication, skills training, social program, disability rights law, or empowering philosophy of disability.
The usefulness of money may seem obvious. But it helps to be specific about what money can do, specifically for disabled people.
For a start, money can pay for health care, therapies, and specialized equipment that helps disabled people lessen or work around their disabilities. In the U.S. at least, making full use of medical techniques to improve physical and mental health costs money. Private health insurance itself costs money. Even under Medicare or Medicaid, copays add up quickly, especially for disabled and chronically ill people who need treatment and medical supplies more than just a few times a year. And there are always hidden charges and out of pocket costs associated with any “free” or “covered” healthcare.
MORE FOR YOU
Then there’s technology. It offers constantly improving ways to cope with specific impairments — things like better wheelchairs, home automations, and of course, the explosion of internet-connected smartphones, tablets, laptops, and personal computers. Technology opens up the world to people with disabilities. But it all costs money, often a lot of it. And unlike standard medical treatments, it can be extremely hard or impossible to get technology and equipment paid for. Disabled people usually have to spend enormous amounts of money out of pocket for the most liberating gadgets. Relatively few can afford to do that. And those who can pay for assistive technology almost always have a much better shot at greater independence than those who can’t.
Money can also buy a higher grade of physical accessibility, at least in disabled people’s homes and other spaces they control. It’s money that makes ramps, automatic doors and home elevators, and fully accessible bathrooms possible. Unfortunately, it’s even harder to get accessibility paid for than personal equipment like wheelchairs.
Money can also provide the most fundamental accessibility solution of all — the freedom and flexibility to hire and direct people to help disabled people do things they can’t do for themselves. It sounds cold and impersonal to put it this way, but no technology or accessibility modification is as versatile and responsive to a disabled person’s needs as an actual person paid to help them. Long term care insurances, Medicare, and Medicaid can pay for some forms of “home care.” But the scope and duration of their coverage varies widely, from program to program and state to state.
Money buys essential access, like wheelchairs, accessibility, and home care. But it also plays a more subtle role for people with disabilities. Having money enhances a disabled person’s ability to get to and buy their way into entertainments and recreations that in turn help them integrate socially into their communities. In theory, socializing is free. But it really isn’t, especially for people with disabilities. If you want to meet a friend for coffee, you have to pay for it. Lunch at a restaurant always results in a bill. Movies cost money, whether paid to a theater, a streaming service, or a DVD store. And using the internet in almost any way costs money, in the form of sometimes small but quickly accumulating connection bills and little app and game subscriptions.
Plus, physically getting to where other people are is more than half the cost of developing a social life. Owning a functional, adapted car is an incredible tool of independence for disabled people, but one that’s often financially out of reach. Private taxi and van services cost money of course, as does Paratransit, regular bus lines, subways, (when they’re not entirely inaccessible), and rideshare services, which seem to have unlimited freedom to overcharge or outright discriminate against disabled customers. Having money makes social integration easier. Lack of money makes it harder. It’s that simple.
On the other hand, having money also makes it easier for disabled people to isolate themselves when they feel the need. Money helps them avoid at least some of the personal interactions that produce painful run-ins with ableism. With money, disabled people have to do less asking, less winning people over. They have fewer bureaucratic hoops to jump through. They can choose and direct their own care, rather than relying on family commitment or neighborly goodwill. They can choose to live in a house or apartment where they don’t have to deal with roommates or close neighbors if they don’t want to. Money means being able to pay a little extra for grocery deliveries and online shopping shipped to their door. Self-isolation isn’t the best escape from an ableist and inaccessible world. But for many people with disabilities, it can be a necessary relief, and money makes it possible.
It’s a positive thing that money can do so much to make disabled people’s lives better. Unfortunately, disabled people tend to have less money than others. And simply having a disability is expensive. Browsing the Twitter hashtag #CripTax reveals scores of examples:
It’s more expensive for disabled people just to survive. It’s also more expensive for them to live better. Money can buy disabled people more choices, more autonomy, and even — to an extent few would like admit — more respect. Money is arguably the most valuable and essential adaptive tool, one that far too many disabled people are missing from their lives.
Until very recently, the modern disability rights movement has responded to this need through indirect approaches. For the last several decades, disability activists have largely placed their bets on passing, enforcing, and defending disability rights. The goal is to open up more equal opportunity for disabled people — legally, socially, and economically.
At the same time, other advocates and disability service providers have focused on employment, through a combination of education and skills training training, encouraging more disabled people to try working, and persuading employers to hire disabled people. The idea is that the best way for disabled people to achieve financial security and freedom is through good jobs, reinforced by strong disability rights laws, better training, and more inclusive workplaces. This strategy makes sense, and has been successful — up to a point.
Meanwhile however, the disability community has focused somewhat less on actually increasing the money available through benefits — on simply giving disabled people more money as a tool of empowerment. As they are, SSI and SSDI have vastly improved the lives of millions of disabled people. But they have fallen far out of date, and have long standing structural flaws.
Most disabled people, especially those either seeking benefits or already on them, know the painful contradictions firsthand. Getting on SSI or SSDI is a long and arduous struggle — and being approved is a real victory for survival. But monthly payments are almost always far too low to provide meaningful liberation. And when disabled people try to earn and save more through work, they risk losing benefits and being worse off than before. Disabled people have known for a long time what benefits changes would make their lives better. But until recently they have almost never been viewed as real political possibilities to rally around.
This is why disability activists were so energized in early 2020 when they were able to get first the Warren and Sanders presidential campaigns, and then the Biden campaign, to endorse real structural changes and increased benefits for SSI and Social Security Disability. For once, the goal was more than another tiny “cost of living adjustment” or complex “work incentive” program. These changes would be designed to raise disabled recipients’ incomes significantly, allow them to save for a rainy day, and work when they can to further boost their incomes. Later, the original “Build Back Better” plan included some of these reforms to SSI. The proposals are also part of a separate bill, The SSI Restoration Act.
The prospect of real change sparked hope and advocacy in the disability community, expressed in the Twitter hashtag #DemolishDisabledPoverty.
It looks now like the only change if the broader reconciliation package does go through will be extending SSI benefits for the first time to Puerto Rico and the U.S. Territories. That would be a just and valuable change in itself, but far from what was originally proposed.
So, where does that leave the disability community? Partisan politics, shaky promises, and Washington gridlock aside, what do disabled people need to do to draw more attention to the seemingly simple and effective, but politically difficult task of getting more money into disabled people’s hands?
To start with, both the disability community and society at large need to recognize more clearly the importance of money in most disabled people’s quality of life. The next step after that is to get over any reluctance they might have about asking for more and better benefits. While people with disabilities continue to pursue self-reliance through work, there should be no shame in advocating not just for civil rights, but for more money where it will make the most difference.
Politically, one possible key to success is for disabled people who are already financially secure to weigh in on behalf of those who aren’t. That starts with learning about how other disabled people — maybe most disabled people — actually live and what really stands in their way. This is where “checking your privilege” is more than just “virtue signaling.” It’s a necessary reality check and motivation for successful disabled people to pitch for their fellow disabled Americans.
Whatever happens with the “Build Back Better” package in Congress, maybe it’s finally time for the disability rights and justice communities to make raising and reforming benefits a top priority, rather than just a pipe dream.
