Shaping Disability Advocacy

With the many variations in the great and diverse population of the disabled comes various opinions that drive wedges between even the smaller core of committed disability advocates. However, there are several beliefs, mindsets and ideas that shape the group of people and institutions loosely referred to as “Disability Activists.” One cannot claim that these are boundaries but instead, they are more like magnets that attract all disability activists in specific directions.

So, what are these key beliefs and positions and how exactly do we identify them? Through this article, we aim to define disability activism as more than a set of activities but rather a movement that has both great diversity and a clear direction.

What makes up the disability experience? Two main aspects; firstly, we have people’s own mental and physical conditions, which could come in the shape of many forms: mood, anxiety, personality, and organic brain disorders or mobility, visual, hearing impairments as well as intellectual and learning disabilities. All of these could form the standard components of disability itself. So, the first aspect is effectively a medically-based personal experience.

We then have the many attitudinal, environmental and institutional barriers imposed upon people who are disabled, by the societies that fail to allow them the opportunity to participate and flourish. These can include but are not limited to; lack of access to physical or mental healthcare services; vital spaces and products or processes – as well as discrimination by people, organizations and laws. These possible barriers are the societal forces that make the disability experience a lot more than a purely personal and medical one.

For a long time, these two aspects have been known as the “Medical” and “Social” models of disability. The majority of the disabled population experience elements of both, and our main concern is directed to or the other by the factor of how much we look to ourselves and to other people and to society for a healthier, happier life.

Disability activism in the 21st century is mainly based on the Social Model of disability. Modern disability advocacy is focused more on collaborative efforts to make communities more supportive, equitable and accessible, and far less concerned with funding for the research and development of new treatments and therapies. This transition is less an issue of correct and incorrect approaches than it is a shift in priorities. To phrase it succinctly, disability activism nowadays no longer seeks to fix the people’s disabling conditions but rather fix societies’ ableism.   

Defining Disability Narrowly and Broadly

For a long time, the disability community was mostly known to consist of people who are blind or deaf, people in wheelchairs and those with intellectual and developmental disabilities. But over time, we slowly started including mental disorders, chronic illnesses and chronic pains as categories within the community. In 1990, the definition of disability under the Americans with Disabilities Act (ADA) was modified to include such impairments that limit at least one major life activity, and therefore turning this ‘trend’ into a permanent change.

Although it is widely acknowledged that this more extensive definition of disability is just appropriate, the truth of the matter is still not entirely established, even within the smaller community of committed disability activists. There persists a hierarchy in which people with certain disabilities – such as physical impairments – dominate, whereas others – often those with not-so-visible disabilities – are still given less importance and value. Within society, we also find that individuals tend to associate the word “disabled” with those using physical devices such as wheelchairs, hearing aids, white canes, and prosthetics. Meanwhile, people belonging to other disability groups, which are often seen by society to be adjuncts, are looked upon and treated with different standards of respect, acceptance and assistance.

The focus now is on reinforcing this broad definition of disability, not only amongst people outside disability culture but within groups of activists as well. Accessing the same public spaces, equal housing, education and employment opportunities, in addition to social respect are not rights fought for solely by deaf or blind people. It is the fight of all people with physical and mental impairments. So, although people experience vastly different forms and shapes of disabilities, they have enough in common for them to all fall under the umbrella of “disabled”, making disability advocacy today have more span and diversity than ever before. 

The Disabled Adapting to Society or Society Accommodating the Disabled

Disability rights laws like the ADA accessible building standards are built upon the belief that it is our municipal duty as a society to create accepting and accessible environments for all disabled people. However, counterarguments regarding the subject are more than just ubiquitous. There are still widespread beliefs that society’s responsibilities towards the disabled population should be limited, and we find that the most praised of them all are those who “rely on themselves” and prove to be “achievers.” While disability activists are often admired and commended for their efforts at first, these attitudes and views tend to wear off, exposing an underlying frustration with activists’ “irrational and unrealistic demands.”

It is ordinarily realized that it is the role of all individuals, including those of us with physical or mental disabilities, to take personal responsibility for our own lives. Disability activism does not oppose such foundational views.

It does not seek to create an environment where people evade their responsibilities and blame others for all adversities. However, there is no place for arguments built upon “limitations” and “relying on oneself” to justify the extreme discrimination and failures of our systems to guarantee accessibility. As laws such as the ADA turn 30 years old, having “realistic” demands and creating more “limited” goals creates nothing but more barriers to barrier-free societies.

Disability Rights Principles Apply to All

Many people naturally tend to divide the disability community into two groups. The first consists of self-directing individuals who may require assistance and support under certain conditions and occasions but can effectively be treated as completely enabled people. The second group is made of those whose disabilities are considered to be extremely significant and severe that they should constantly be cared for and regardless of age can never be treated as independent adults.

This belief draws a line between the two communities and their allies on various issues, which include but not limited to, care homes and institutions, essential medical treatment and therapy, legal guardianship, subminimum wage and sheltered workshops. All these serious issues involve discussions over practices that would never be tolerated or condoned by individuals, such as physical confinement, loss of legal status and privacy as well as substandard employment benefits and wages. Nevertheless, we still have people within the disability advocacy community who support and defend such practices which violate basic rights for some of the disabled population.

However, it would be safe to say that most disability activists firmly believe that all disabled people are competent enough to exercise personal agency and choice in their own lives. It is also a common belief that this population is entitled to the same standards of privacy, dignity and confidentiality that are often taken for granted. Hence, with regards to rights, differences may only arise through the kind of support that we, as a society, provide to those who are disabled. Some are capable of exercising their rights completely independently, while others may require more help doing so. 

But needing assistance should not mean giving up your rights as a person. No matter the differences within disability activism, disability rights are clearly outlined and truly for everyone. This is a fundamental belief that helps us shape disability activism and it greatly informs on another main aspect of the subject…

The Necessity of Congregate Care and Institutionalization

Even with the commonly occurring and widespread problems of abuse and neglect in congregate care institutions such as group homes and residential treatment facilities, there are still people who believe that institutional care is essential. On the flip side, we have those that envision and push for a world without any care facilities. Disability activism aims to create a balance between these two diverging approaches, despite the challenge to do so. Should we work to improve and develop our destructive care systems to create safe and secure environments? Or should we fight and put more effort into abolishing these life-threatening facilities, in favour of a much-needed individualized care system, where disabled people are not only provided with the medical attention required but freedom and community inclusion as well?

This quandary represents the traditional reform versus revolution conflict we see in all social movements. It also takes us back to one of the previous points we raised about the disabled population consisting of two types of people: self-directing individuals who may be considered to be independent, and those whose disabilities are too severe that they must be closely supervised and cared for under specific conditions. The problem mainly lies in the fact that public policy, both historically and presently, has mainly relied on institutional care, with far fewer resources going to set up efficient home-based and individualized care services. So, in practice, whether we can successfully make this transition depends wholly on our commitment to shift and focus our efforts and investments into better alternatives.

All these aspects do not form strict boundaries and rules which must never be violated. In fact, through this article we see that there happens to be plenty of differences within the same community, but there will always be fundamental and specific views to bring all disability activists together. This is precisely what the aspects discussed represent: indicators of what this movement is about and what it tries to achieve, giving it both shape and direction.

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