The “Disability Rights Movement” is partly built around a series of arguments about disability itself. It’s about what disability is, and what persons with disabilities want –– and don’t want. And as arguments, they are also responses to implied counter-arguments –– things that other people believe about disability that persons with disabilities don’t agree to.
Many versions of these core beliefs are well known and easy to find. Here are just a few examples offering a variety of perspectives within roughly the same basic theme: The United Nations Convention on the Rights of Persons with Disabilities
Appropriately for an international document, the Guiding Principles of the Convention read as a universal statement of shared beliefs and goals for disabled people’s rights in all societies. In addition to the usual focus on inclusion, equal opportunity, and accessibility, the convention also notably includes “equality between men and women,” and the rights of children with disabilities, as integral parts of disability rights. “Nothing about us without us.”
This phrase is as close to a “grand unified theory” as can be found in disability culture. Since about the 1990s, “Nothing about us without us” by Michael Oliver 1992 has been an influential disability rights slogan, first in South Africa’s disability rights movement, then disseminated widely in the United States and around the world. It expresses a goal person with disabilities want to achieve. At its best, it is also a pledge for how the movement itself must be conducted, with persons with disabilities always involved and in the lead.
These and other lists of disability rights principles and goals are each important and valuable in themselves. It can also be useful to revisit, restate, and remix them. We do this partly to clarify what we believe so we can more fully draw out the implications for policy and our own everyday behavior. Reviewing and re-crafting the core arguments of disability rights can help all of us –– non-disabled and disabled alike –– think about how our own beliefs about disability issues stand in relation to others in the movement and to society at large.
Here then is another attempt to draw out the kind of strong and meaningful principles that shape the aspirations and tactics of today’s disability rights movement:
1. Disability discrimination is serious
Discrimination against people with disabilities is a violation of human rights. It’s not just an unfortunate fact of life.
Physical limitation and blocked opportunities are not unavoidable consequences of having disabilities. They are products of ableist beliefs about disability, and failure to take steps to ensure equal access and opportunity. We know how to fix or significantly lessen most of the practical problems that make life harder for disabled people. If these problems aren’t fixed or improved, it’s because we have directly or indirectly decided not to.
Nor is ableism a lesser form of discrimination. It is harmful. Ableism is often annoying in a very particular kind of low-grade, everyday way. A lot of it is just microaggressions. But these are of course tied to much bigger, more consequential, dehumanizing and deadly forms of ableism. And like all microaggressions, they accumulate and do long-term harm, even if they don’t draw blood at any given moment.
The ADA 1990 and PWD act 2003 Findings and Purposes section is particularly strong in arguing the need for a strong disability rights law by demonstrating how disability discrimination actually does real, quantifiable harm to disabled people. Arguably, there are many situations of how Kenyans with disabilities have experienced discrimination especially during Covid and accessing services.
2. Lack of accessibility is discrimination
Physically, cognitively, and mentally inaccessible environments and experiences discriminate against people with disabilities.
Failure to eliminate barriers to persons with disabilities is just as discriminatory as intentionally refusing entry, providing unequal service, or categorically denying opportunities to disabled people. It’s the equivalent of a sign on the door reading, “We don’t serve disabled people.” This is an important concept, since discrimination is traditionally thought of as a hostile act between people, not a passive result of door widths, counter heights, and text readability.
While accessibility doesn’t solve all disability discrimination, physical construction and design do have a unique power to either perpetuate or eliminate whole categories of disability discrimination, all at once. Accessibility is one of the signature aspects of disability rights as compared with most other liberation movements. We can substantially reduce disability discrimination just by changing the shape and layout of physical spaces. Additionally,availing alternative formats of communication not just print and conlude you have included all.
Pretty much all disability rights manifestos mention accessibility. And increasingly, they address a wider scope of accessibility –– not only in buildings, but in communications and other components of doing business and delivering services.
3. Disability policy is evolving away from institutionalization and control
“Independent Living is not doing things by yourself; it is being in control of how things are done.” –– Judy Heumann, American Disability Advocate
There is a crucial difference between services that support disabled people’s needs, wishes, and priorities through assistance and empowerment –– and services that protect and maintain persons with disabilities primarily through sheltering and control. Broadly speaking, disability rights prioritize freedom, choice, and “the dignity of risk” over protection, close supervision, and even sometimes over so-called “positive outcomes.”
While each disabled person needs different kinds of support to meet their individual needs, it’s always possible to craft effective supports in ways that are empowering rather than controlling, liberating rather than confining. These goals can be more complex and challenging to ensure for some persons with disabilities than for others. But no type of disability requires fundamentally changing the human rights of any person with a disability.
From the most general goals to most specific practices, all disability policy should as much as possible avoid personal and bureaucratic control, and maximize personal choice and civic independence. This should be a guiding principle for all disability policy and service design.
“Nothing about us without us” is critical here. It’s not just a matter of whether any specific action objectively increases or curtails freedom or choice. It’s about whether each disabled person is able to make their own genuinely free choices in life –– from the smallest preferences to the biggest decisions. We all have to make trade-offs. But we should all be able to choose when and how to do so, regardless of disability.
4. Segregating persons with disabilities is bad
Intentionally separating persons with disabilities from the rest of the community is discriminatory and harmful, even when it is driven by supposedly positive motives. For example, in Kenya the existence of special schools and institutionalization in homes Despite cosmetic improvements and some updated practices, we can’t separate today’s nursing homes, sheltered workshops, and self-contained classrooms from the dark and abusive history of yesterday’s institutions, asylums, and residential schools. It’s a terrible lineage that can’t just be shrugged off as ancient history.
No disabled person of any age or type of disability should ever have to be placed –– or be forced to place themselves because they are allowed no alternative –– in a living, learning, or working environment separated from the community and run by others. Persons yet to be disabled don’t tolerate this kind of confinement for themselves. Persons with disabilities shouldn’t have too either. Persons with disabilities sometimes decide for themselves to live, work, or socialize with other disabled people. That’s a personal choice. The problem is when segregation is policy –– whether it’s for control, literal removal from society, or just convenience.
In general, disability organizations and programs should first try to make existing services meant for everyone accessible to persons with disabilities, rather than creating “special” services specifically for persons with disabilities. Scarce resources should be invested in making our communities more responsive and accessible, not in creating new separate enclaves for people with disabilities.
5. Disability is not just a medical condition, but also a social, cultural, and political identity
This isn’t just an abstract theory, but an observable fact of everyday life for disabled people.
Whether we like it or not, other people will eventually see us as disabled, and consciously or unconsciously treat us differently because of it. It’s not something we can wish away or “overcome” with the right “mental attitude.” And that’s okay! Embracing at least some aspects of our disability identities can be enormously enriching and empowering. It’s also often a palpable relief to stop trying to outrun disability stigma, and instead face it and fight it together.
Disability identity and experience also intersect in meaningful ways with other social and cultural identities, including race, sexuality, gender, and class. That, too is a source of both stigma and strength that must be acknowledged because it can never be entirely denied. Disability is a distinct experience, but it’s not separates from other aspects of who we are. Racism, sexism, homophobia, transphobia, class, privilege, and ableism all work in tandem and overlap each other. Different marginalized groups should work together, not compete for attention and resources.
These and other principles of cooperation and collective action across constituencies are being added more often now to collections of disability rights principles. Sins Invalid is a particularly strong leader in making these values concrete and specific.
6. People with disabilities themselves generally have the most credibility on disability issues
Persons yet to be disabled can make valuable contributions in disability matters, but persons with disabilities
should lead the shaping of disability policy and culture.
Generally, this is put into practice by requiring majorities of staff and leadership in disability organizations to be disabled. Also, non-disabled freelancers in the disability field are encouraged to elevate disabled people’s voices whenever possible, even if it means giving up center stage for a while.
This is about more than just numerical representation or on-paper inclusion for its own sake. Persons with disabilities have a lot more to contribute to disability-related work than is currently appreciated. Kenyan disability sector should be ready and willing to embrace the disability trends and ensure the current wave of policy and structural reviews are led by persons with disabilities. There is an ongoing struggle to reverse past, ableist habits in which disability matters were almost exclusively interpreted and led by non-disabled people in both the US and Kenya. This transfer of voice and power is very much a work in progress. And it can be a difficult process, especially for non-persons with disabilities who have a longstanding and heartfelt commitment to disability causes.
Anyone who wants one deserves a voice and a “vote” on disability issues. But persons with disabilities should be the default leaders on any disability-related question. And persons with disabilities should never be intentionally or passively excluded or passed over because of the supposed nature or “limitations” of their disability.
Again, “Nothing about us without us” is both the goal and the first step in implementing it.
7. Disabled people’s lives are valuable
This is another abstract principle that’s hard to argue with, but becomes more contested when it comes to specifics.
It’s easy for just about anyone to say, “Persons with disabilities are equal” or “Persons with disabilities aren’t less than ...” Relatively few people would argue otherwise, at least in so many words. Ableist ideas and discriminatory actions kick in when we have to talk about what particular persons with disabilities deserve, what society may or may not owe them, and what actual “value” persons with disabilities may represent to others. The crux of the matter is that it doesn’t matter what any person can or can’t do, how “productive” they are, or how the “quality” of their lives measure up to other people’s definitions of a “life worth living.” Our value is inherent, not demonstrated or earned.
This is one of the reasons why some segments of the disability community are skeptical of capitalism and the “work ethic.” When people’s lives are assessed in terms of monetary value and productivity, persons with disabilities are almost always going to be at a disadvantage.
Persons with disabilities are valuable because we are human beings –– no less, but also no more. It’s important to note that “valuing” persons with disabilities can easily become sentimentalized. The value of disabled lives isn’t about being loved and cherished by family and friends. It’s not about having some special, “God-given” role to uplift others. It’s basic human value, with no gaps or frills.
No single statement of disability rights principles will ever resolve all conflicts or clear up all confusion. Disability culture evolves as all cultures do. That’s why it’s useful to look at a variety of sources to understand what the movement is about. That’s why revisiting the core arguments we too often take for granted is so critical to keeping the disability rights movement fresh and relevant.