Five questions
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What is the form of disability activism?
There are many natural differences in the large and diverse disabled population and many different opinions among the smaller core of dedicated disability activists. However, there are some beliefs, positions, and mindsets that shape the community of individuals and organizations that are loosely referred to as “disability activism”. They’re not exactly boundaries or litmus tests. Rather, they are magnets that pull disability advocates in certain directions. What are these key positions? How do we identify them?
Here are five questions that go a long way in defining disability activism as more than a set of moods and activities, but as a movement with both diversity and direction.
1. Is disability primarily a medical or social experience?
The experience with disabilities has two main aspects. First, there are people’s own mental and physical conditions, practical impairments, pain, complaints, diseases and functional disorders. These form the traditional components of the disability itself. It is essentially a personal experience and medically based.
Then there are the barriers that people encounter that are related to their disabilities but come from the outside. This can include the lack of physical, sensory or mental access to essential spaces, processes, goods and services as well as discrimination by individuals, laws, institutions and practices. These are the social forces that make disability so much more than a purely personal and medical experience.
These two aspects of disability have been referred to as the “medical” and “social” models of disability for some time. Most disabled people experience elements of both. But whatever your primary concern will be both influenced and further influenced by how much you look to yourself for a better life and how much you look to outside people and social forces.
Modern disability activism is mainly based on the social model of disability. It’s more about collective action to make society more acceptable, equitable and accessible, and much less about funding medical research or developing new treatments and therapies. This is less a question of right or wrong than a difference in focus. But there is enough difference to give disability activism a markedly different tone, taste, and direction than, say, fundraising for medical research or treating disability conditions. By and large, disability activism seeks to address the capacity consciousness of society, not the disabilities of disabled people. This gives disability activism its most essential and clearest form and dimension.
2. Should “disability” itself be defined narrowly or broadly?
At least 30 years ago, the “disabled community” was mainly understood to mean wheelchair users as well as the blind, deaf and people with intellectual and developmental disabilities. More than before, we are including mental illnesses, learning disabilities, chronic illnesses and chronic pain as disabilities. In 1990 the ADA’s definition of a qualified disability helped consolidate this trend, which continues to this day.
Most people who have any experience with disability culture recognize that this broader definition of “disability” is right and correct. But the truth about this is still not fully cleared up, even within the disability council itself. There is still an implicit hierarchy in which people with physical disabilities dominate, and people with other disabilities, especially people with mental or intellectual disabilities, still will too often treated as a secondary partner. And outside of the disability culture, people still tend to associate the word “disabled” with wheelchairs, crutches and prostheses and possibly hearing aids and guide dogs first – with other disability groups treated as additional or different groups with different concerns and standards Treatment.
However, there is a strong trend towards emphasizing a broad definition of disability, particularly in the area of disability activism. Legal equality, physical freedom, personal choice, equal opportunities as well as social respect and social inclusion are not only concerns of wheelchair users. They affect all people with physical or mental impairments. While people suffer from very different conditions, they have more than enough in common that they all fall within the definition of “disabled”. This gives disability activism much more diversity and scope than it used to be.
3. Is it the responsibility of disabled people to adapt to society or the responsibility of society to take in disabled people?
Disability rights laws like the Americans With Disabilities Act and Accessible Buildings Standards are based on the idea that we all have a civic duty to create a more accessible and equitable environment for people with disabilities. However, popular perceptions about disability are more mixed.
There is still a counter-argument which says that society’s obligations towards disabled people should be limited and that the most laudable disabled people are those who “help themselves”. While disability activists for accessibility and accommodation are often admired at first, this initial goodwill quickly burns off and shows an impatience with the “unreasonable demands” of disability activists. In popular culture, notable disabled “achievers” are celebrated even more lavishly.
Everyone recognizes that we all have personal responsibility for our own lives, including those of us with disabilities. Disability activism is not about shirking responsibility and blaming others for all misfortunes. At the same time, there is little tolerance in disability activism for arguments about “limitations” and “undue hardship” as reasons for persistent discrimination and inaccessibility. To be “realistic” in relation to a barrier-free society and to consciously achieve “limited” goals makes less and less sense, as laws like the ADA are turning 30 years old and the Rehabilitation Act is almost 50 years old.
So there is a firm belief in disability activism that it is right and justified to ask more from government and society. The movement values diplomacy and realism. But it is not afraid to take up more space in public attention and priorities.
4. Do some people have disabilities that are so “severe” that the principles of disability rights do not apply to them?
Some people naturally seem to divide the disabled population into two segments. A group is made up of self-governing individuals who may need help and are housed here and there, but can essentially be treated as normal, functioning individuals. The other group consists of people whose disabilities are seen as so significant or “profound” that they are like very young children who should be valued and cared for, but who, regardless of age, can never be treated as full adults and free people.
This idea that there really are two different communities of disabled people divides disabled people and their allies on numerous issues, including long-term care and institutionalization, the right to life-saving medical treatment, the advantages and disadvantages of legal guardianship, the minimum wage and sheltered workshops and parents. who share intimate details about the lives of their disabled loved ones without their consent. All of these topics include debates about practices that most people would never tolerate for themselves, such as physical separation and imprisonment, loss of legal status, denial of privacy, inferior pay for work, and even the right to life. However, there are still people within and alongside disability activism who accept and defend different standards of fundamental rights for some disabled people.
By and large, however, disability activists believe that all disabled people are able to make personal decisions and choices in their lives, and that they have the right to the same standards of dignity, privacy and consent that most people enjoy hold of course. Some can exercise their rights independently, with or without simple help. Others need more intensive or more extensive support. But those who have the most disability-related difficulties weighing options, making decisions, and communicating them accurately should also be supported in exercising maximum personal freedom. Needing help shouldn’t mean giving up your rights. Disability activists may differ in a few ways, but disability rights really are for everyone. This comes close to an essential, defining belief in disability activism. And it is very informative about views on another key issue of disability activism …
5. Is community care and control always necessary for some disabled people?
Even among people concerned about the problems of abuse and neglect in nursing homes, assisted living facilities, group homes, and other “community care”, there are some who believe institutional care is essential and needs improvement. Others envision and strive for a future without care facilities. There is an uncomfortable balance between two approaches in disability activism. Are we trying to make these fundamentally limited and flawed care systems a little safer and more beautiful so that fewer people suffer and die unnecessarily? Or are we pushing for greater efforts to deviate from or abolish community care facilities in favor of a much larger investment in more personalized home care services so that disabled people are not only safe and healthy, but also free and integrated into their communities?
This dilemma partly reflects the typical reform-revolution conflict found in all advocacy movements. But it also goes back to the question of whether all people with disabilities can be self-determined and, in a certain sense, “free” or whether some are simply “too disabled” and need closer monitored and protected care.
The broad consensus in the area of disability activism is that public order is far too dependent on institutional care in “facilities” and that far too little money and commitment is invested in home hygiene and other individualized services. Regardless of whether we can ever phase out care facilities or get rid of them altogether, there is general agreement that we rely too much on them and that much better alternatives are nowhere near being adequately used.
These and other questions do not set strict boundaries or constitute orthodoxy that must never be violated. They are not membership tests for disability activism. But they are indicators of what disability activism is and what is not, and markers of the ideas that influence the shape and direction of the disability rights movement. For new activists in particular, questions like these can help clarify where we stand and how conventional views on disability are changing.
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