Life Hacks or Activism? A Key Question for People with Disabilities

When people with disabilities face the many kinds of problems common to the disability community, they are faced with a choice. It’s a critical choice with enormous implications. But it’s a choice rarely discussed in any coherent way. It’s often made more by habit, temperament, and instinct than by careful consideration.

The choice is whether to solve a disability-related problem individually, through personal effort and innovation, through the disability equivalent of “life hacks” — or through collective social and political action, that is, through disability activism.

There is a lot to consider for a disabled person confronting practical barriers or personal ableism.

Is there a way I can improve my own situation — get a better outcome for myself — right here and right now?

What goals or values do I risk sacrificing if I take a purely pragmatic and self-interested approach?

Is this a good time to confront ableism, to educate, to demand real change? If it’s not a good time now, then when?

Which strategies work better for me personally, and which are better for broader disability rights, anti-ableist goals?

What, if anything, do I personally owe other disabled people in terms of solidarity, work, and sacrifice for the disability community?

There are many different kinds of ableism and other disability-related problems. Each poses particular challenges for individuals with disabilities. Each prompts disabled people to ask a different but related series of questions about what is the best approach in each situation. Which approaches work best, for whom, and to what end?

Annoying or hurtful ableist comments

These are the awkward or insensitive comments disabled people hear all the time, such as, “People like you are a real inspiration to me,” or “It’s too bad you’re in a wheelchair because otherwise you’d be really attractive.” Some are hurtful, others merely annoying. They all wear disabled people down, cumulatively over time if not all at once.

A more activist approach is to directly “call out” ableist comments. Instead of ignoring the comment or making a light joke of it, a disabled person may decide to “step up,” so to speak, and explain why it is inappropriate or hurtful. Some disabled people undoubtedly do this for personal reasons — for the quick, short-term reward of venting real anger. Others do it more coolly and deliberately, not to shame or punish, but to teach.

Either way, confronting everyday ableist comments is hard work, and a sacrifice. Few people take kindly to being told that what they thought was a harmless or even friendly comment was actually offensive. Disabled people pay an immediate price for confronting personal ableism — the wounded, “What’d I do?!” look, the defensive comeback, the inevitable, “Lighten up, you’re too sensitive!” The question is whether it’s worth it in the long run — if confronting ableist comments results in a less ableist social climate down the line. And if so, is this long-term improvement worth the almost inevitable short-term tension and backlash? And is it worth it for a disabled person to risk being seen in a more personally negative light in order to improve how disabled people in general are treated?

Physical barriers and discrimination

There is far more to ableism than than words and feelings. Disability discrimination is also practical and concrete — sometimes quite literally. Disabled people still encounter steps to get into restaurants, lack of Sign Language Interpreting for legal proceedings, poor treatment and miscommunication during a hospital stay, and a thousand other specific instances where disability prejudice comes in the form of physical design, or institutional policy and practice.

People with physical disabilities usually avoid places that aren’t accessible. This is the most basic “coping strategy” approach to inaccessible buildings — just avoid them. It’s sensible but also limiting and passive. Likewise, Deaf people sometimes choose to “get by” without really effective communication, because it’s easier in the short term than insisting on accommodations. But inadequate communication can have enormous legal, financial, and health consequences. And people with disabilities often have difficulty in hospitals and other medical settings, where their disabilities can be misinterpreted or not properly accommodated. For some the answer is to try to be as agreeable as possible, even under risk and duress, so as not to antagonize the medical staff they are dependent on. It sometimes works, at least temporarily. The temptation to compromise basic rights in order to avoid “burning bridges” is always a factor whenever and wherever disbaled people run into barriers and discrimination.

A more activist approach again calls for more work and risk from individual disabled people, but with the prospect of much better outcomes and more long-term progress. It means telling business owners when physical barriers cause them to choose other businesses, or ruin evenings out because of unexpected inaccessibility. It means standing firm for Sign Language Interpreting or other accommodations, and not accepting poor substitutes just to avoid conflict. It means addressing unequal, unfair, or ableist treatment in hospitals and other institutional settings, even if it risks being labeled as a “problem patient” or “disgruntled” customer. These approaches may or may not result in positive results for an individual disabled person in a specific situation. But they help put pressure on businesses and other institutions to confront their own ableism — and someday soon do better for all people with disabilities.

Poverty

Money is in many ways the most effective adaptive tool for people with disabilities. But so many factors keep far too many disabled people in poverty. Millions of disabled people are unemployed or stuck in low paying jobs — some at below minimum wage. Even programs that are supposed to help with disabled people’s financial security put up barriers, such as health insurance and income support many disabled people can’t live without, that drops off if they work and earn too much, or in some cases if they marry.

The most obvious, familiar, and almost universally praised goal for people with any disability is to train, (or retrain), learn good workplace skills, and get a good job as a path to financial security, social integration, and that vague but attractive ideal of “fulfillment.” There is debate in at least parts of the disability community about the real connection between employment and financial security. The cross-cutting incentives are confusing. Opportunities are spotty at best. Pathways to self-sufficiency are littered with barriers — related to disability, but also to race, gender, social status, or other factors. And structures in place to help disabled people, like Social Security Disability, Supplemental Security Income, Medicaid, and Medicare — though in many ways effective and essential — tend to “trap” disabled people in or near poverty. So while it’s no mystery what disabled people are supposed to do in order to prosper — work hard and get a job — there are solid limits on what many individuals with disabilities are able to achieve solely through their own efforts and talents.

Here, activism truly may be the only effective answer — ending legal sub-minimum wage, enforcing disability rights laws, and redesigning benefits programs to encourage rather than penalize earning and saving. But here too the potential for payoff feels remote. Legislation like this takes years, and in some cases may be practically impossible, at least in the current U.S. political climate. Recent activism to save the Affordable Care Act and pass Covid relief had immediate positive effects for disabled people. Disability activism has won many impressive victories over the last 40 or so years. But most disabled people can’t rely on legislation and other successful disability activism to improve their personal finances in anything like the short term. So while activism to address disabled poverty is essential for the disability community, it is perhaps the least satisfying and effective approach to helping any particular disabled person in poverty.

What do all of these factors and considerations suggest about the lives and choices of people with disabilities?

First, they show how difficult it is for disabled people to figure out how to respond to ableism, barriers, and discrimination. There are few easy answers, and answers that are right one day may be wrong the next.

Second, they underscore how the interests of individual disabled people and those of the disability community at large intersect and sometimes diverge. Whether consciously or not, disabled people have to choose almost every day between “myself” and “my people.”

Third, these discussions should decisively prove how shallow and unfair it is to judge or nitpick how any disabled person decides to approach the problems they face. Disbaled people who focus solely on their personal goals and celebrating their own achievements aren’t necessarily selfish or oblivious to activism. And disability activists aren’t in it for thrills, power, or vengeance, and they, too, have personal goals and make practical, sensible compromises in their everyday lives.

There are pros and cons at every turn.

Effective, (or seemingly effective), coping strategies, technological innovations, and disability “life hacks” can make a disabled person’s life better. They can also become a cumulative excuse to not make necessary systemic changes. If disabled people can cope with injustice, it can seem less urgent to fight it.

Meanwhile, a more personal, immediate, small-scale approach is often more accessible and realistic for many disabled people than complex, collaborative long-term advocacy. But for those who are truly trapped, restricted, and abused by forms of ableism that can’t be overcome by determination and hard work alone, advocacy may be the only hope.

None of this is easy, and everyone involved in disability issues deserves space and compassion for their difficult choices.