Lifehack or activism?
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When people with disabilities are faced with issues common to the disability community, they are faced with choices – choices of enormous consequence, but choices that are rarely discussed coherently; they are often determined by habit, temperament and instinct rather than careful consideration.
We have a choice: to solve disability-related problems individually, through personal effort and innovation – disability “life hacks” – or to solve them through collective social and political action – the disability movement.
For disabled people who face practical barriers or personal ableism, there is a lot to consider.
Is there a way, here and now, to improve my situation and get a better outcome for myself? What goals and values do I risk sacrificing if I take a purely pragmatic and selfish approach? Is now a good time to confront ableism, educate and demand real change? If not now, when would be better? Which strategies would be more effective for me personally and which would serve the broader disability rights and anti-ableism goals? What obligations, if any, do I personally owe to other disabled people in terms of solidarity, work and sacrifice for the disability community?
There are many different types of ableism and other disability-related issues. Each poses particular challenges for people with disabilities. Each issue leads people with disabilities to ask a different but related set of questions about what the best approach is in each situation. Which approaches are most effective, for whom and for what purposes?
Annoying or hurtful ableist comments
These are the awkward or insensitive comments that disabled people hear all the time. For example, “People like you are such an inspiration to me” or “It’s a shame you’re in a wheelchair, otherwise you’d be really attractive.” Some of them are hurtful, while others are just annoying. All of these can build up over time, if not all at once, and wear disabled people down.
A common response or “life hack” approach to these comments is to let them go without offending or causing a fuss. This means either “ignoring” them or offering a snappy, cheeky retort such as, “I don’t know how you walk all day on those legs!” or “It’s fine, I don’t date able-bodied guys!” The disabled person feels they have defended their position without fueling a disruptive argument.
A more activist approach is to directly “call out” ableist remarks. Rather than ignoring the remark or making light jokes about it, a ableist person might decide to “stand up” so to speak and explain why it is inappropriate or hurtful. Some ableist people do this for personal reasons – to get the short-term reward of venting real anger; others do it more calmly, and purposefully, to teach rather than to shame or punish.
Either way, standing up to everyday ableist remarks is hard work and takes its toll. Few people take kindly to being told that a remark they thought was harmless or even friendly is actually offensive. Disabled people pay an immediate price for standing up to personal ableism: the hurt “what did I do?” look, the defensive retort, and the inevitable “take it easy, you’re too sensitive!” response. The question is whether it’s worth it in the long run – whether standing up to ableist remarks will make our social climate less ableist in the future. If so, is this long-term improvement worth the almost inevitable short-term tension and backlash? And is it worth risking a disabled person being viewed negatively in order to improve how disabled people in general are treated?
Physical Barriers and Discrimination
Ability discrimination is more than words and emotions. It is real, concrete, and sometimes literal. Disabled people still face stairs to enter restaurants, a lack of sign language interpreters at legal proceedings, poor treatment and communication problems in hospitals, and many other concrete examples of ability discrimination that manifest in physical design and organizational policies and practices.
Disabled people usually avoid places that are inaccessible. This is the most basic “coping strategy” approach to inaccessible buildings: simply avoid them. This is sensible, but limiting and passive. Similarly, deaf people sometimes choose to “get by” without effective communication, because in the short term this is easier than requesting an accommodation. But poor communication can have significant legal, financial and health consequences. Disabled people also often face difficulties in hospitals and other healthcare settings, where their disability is misunderstood or not properly accommodated. For some, the answer is to try to comply as much as possible, even under risk and pressure, and not antagonize the medical staff they rely on. Sometimes this works, at least temporarily. The temptation to compromise basic rights to avoid “disconnecting” is always a factor whenever disabled people encounter barriers or discrimination.
More proactive approaches demand more effort and risk from individuals with disabilities, but they promise much better outcomes and more long-term progress. It means telling business owners if you choose another business because of physical barriers or ruin a night out because of unexpected inaccessibility. It means insisting on sign language interpretation and other accommodations and not accepting poor-quality alternatives just to avoid conflict. It means addressing unequal, unfair, or ableist treatment in hospitals and other institutions, even at the risk of being labeled a “problem patient” or a “disgruntled” customer. These approaches may or may not produce better outcomes for individuals with disabilities in certain situations. But they can help pressure businesses and other institutions to confront their own ableism and encourage them to do better for all people with disabilities in the near future.
poverty
Money is in many ways people with disabilities’ most effective adaptive tool. But so many factors keep too many people with disabilities out of poverty. Millions of people with disabilities are unemployed or in low-wage jobs, some making less than minimum wage. Even programs that are supposed to help people with disabilities become more economically stable end things they can’t live without, like health insurance and income assistance, if they work and earn too much, or in some cases, if they get married.
The most obvious, well-known, and almost universally praised goal for people with any disability is to get trained (or retrained), acquire skills that will be useful in the workplace, and get a good job as a path to economic stability, social integration, and the vague but alluring ideal of “fulfillment.” At least in some parts of the disability community, there is debate about the true relationship between employment and economic stability. Cross-cutting incentives are elusive. Opportunities are sparse at best. The path to independence is riddled with barriers—related not only to disability but also to race, gender, social status, and other factors. And the institutions in place to support people with disabilities, such as Social Security Disability, Supplemental Security Income, Medicaid, and Medicare, although effective and essential in many ways, tend to “trap” people with disabilities in poverty or near poverty. So while it’s no mystery what people with disabilities should do to thrive—work hard and get a job—there are clear limits to what many people with disabilities can achieve through their own effort and talent alone.
Activism may really be the only effective answer here: repeal legal subminimum wage treatment, implement disability rights laws, and redesign benefit systems to encourage rather than punish earnings and savings. But even here, the likelihood of success seems remote. Such legislation would take years and, at least in the current U.S. political climate, may be virtually impossible in some cases. Recent activism to defend the Affordable Care Act and pass COVID relief had immediate positive effects for people with disabilities. Disability activism has scored many impressive victories over the past 40 or so years. But most people with disabilities cannot rely on legislation or other successes of disability activism to improve their personal financial situations in the short term. So while activism addressing disability poverty is essential for the disability community, it is perhaps the least satisfying and least effective approach to helping specific people with disabilities who are in poverty.
What do all these factors and considerations suggest about the lives and choices of people with disabilities?
Firstly, it shows how difficult it can be for disabled people to think about how to deal with ableism, barriers and discrimination – there are rarely any easy answers and what is right one day may be wrong the next.
Second, it highlights how the interests of individual disabled people and the disability community as a whole intersect and sometimes diverge. Whether consciously or not, disabled people are forced to choose between “me” and “them” almost every day.
Third, these discussions should conclusively prove how shallow and unfair it is to criticize or micromanage how disabled people address the problems they face. Disabled people who focus only on their own personal goals and celebrate their achievements are not necessarily selfish or disinterested in activism. Disability activists are not in it for thrills, power or revenge; they too have personal goals and make practical, sensible compromises in their daily lives.
There are pros and cons in every situation.
Effective (or seemingly effective) coping strategies, technological innovations, and disability “life hacks” can make the lives of disabled people better. They can also be cumulative excuses for not making needed institutional changes. If disabled people could deal with injustice, it might not seem as urgent to fight it.
On the other hand, for many disabled people, more personal, immediate, small-scale approaches are often more accessible and practical than complex, collaborative, long-term advocacy. But for those who are truly trapped, restricted and abused by forms of ableism that cannot be overcome by determination and hard work alone, advocacy may be their only hope.
None of this is easy, and everyone involved in disability issues deserves consideration and compassion for the difficult choices they make.