Affirming Persons Living with Disability

July marks the observance of Disability Pride Month, an opportunity to commemorate the signing of the Americans with Disabilities Act (ADA) in July 1990. This month allows us to highlight the unique culture and identity of persons with disabilities, while also representing an opportunity to raise awareness about the experience of living with disability.

Broadly, when thinking about disability, it can be helpful to consider its dimensions: impairment, activity limitation, and participation restriction. Impairment refers to an individual’s body or mental structure or functioning. Activity limitation refers to those physical and mental activities which might be impacted by an impairment, such as difficulty seeing, hearing, walking, or problem solving. Participation restriction refers to those activities in daily living which are oftentimes not readily accessible to persons with disabilities. These can include working, engaging in social and recreational activities, and obtaining health care or other types of services.

Studies show that persons living with disabilities are more likely to have negative health experiences, such as being denied health care or being treated poorly within the healthcare system. Alarmingly, not all healthcare environments even have the necessary equipment to accommodate bodies of differing ability. For example, persons who use ambulatory assistance devices such as wheelchairs may not always be able to receive proper or thorough physical examinations in small clinical spaces, or when exam tables do not allow for easy transfer. Ultimately, these types of limitations in the healthcare system create disparities and worsen health outcomes for persons living with disabilities.

Persons with disabilities are also at increased risk for violation of their rights and victimization. They are 4 to 10 times more likely to be victims of violence, in addition to increased risk of abuse, disrespect, and prejudice. A pervasive lack of policies to accommodate the needs of persons with disabilities further increases barriers for members of this community.

Disability: A Social Construct?

When thinking about disability, it is important not to focus solely on health conditions and/or the body and mind. According to the World Health Organization (WHO), disability “results from the interaction between individuals with a health condition such as cerebral palsy, Down syndrome, and depression, and personal or environmental factors including negative attitudes, inaccessible transportation and public buildings, and limited social support.”

In this theoretical framework, it is possible to consider that ‘disability’ is actually created by our society, rather than occurring primarily as the result of a physical or mental-health condition. Because of our tendency to focus narrowly on being non-disabled and providing services and opportunity primarily for persons without disability, we increase the difficulties and challenges often faced by persons living in different kinds of bodies or with health conditions.

It is our societal structure, physical spaces, and mindset that creates limitations and fosters ableism, the devaluation and discrimination that people living with disabilities can experience. However, we can challenge ourselves to recognize and support the abilities people living with disabilities do have. A mindset that is grounded in our promotion of what is possible for persons living with disabilities can drastically shift the conversation and encourage thinking about how to create opportunities for greater equity.

Welcome to the Group

The disability community is the one group that we could all ultimately belong to. Even though the vast majority of people will personally experience disability at some point, why is it so hard for us to talk about disability and to meaningfully create space—both physical and emotional—for persons living with disability?

Denial.
We spend much of our mental and emotional energy in denial about the likelihood that we will experience illness, and about the certainty of our mortality. Thinking about sickness, death, and dying creates in us both conscious and unconscious anxiety based upon the many natural fears surrounding this process. There is fear of the possibility of pain or suffering, fear of not being in control of our brains or bodies, and the ultimate fear stemming from not knowing what lies beyond death. From a psychological standpoint, perhaps we link the experience of disability with our deepest fears about death; so, rather than sitting with these distressing thoughts and emotions, we deny their existence and try to ignore reminders of these fears—including people living with disability.

Erasure.
Media representation and our access to accurate images of people living with disabilities is sorely lacking. Just think: how many of your favorite television shows, movies, or books feature, or center, characters who are living with a disability? Which social-media platforms, newspapers, and magazines regularly feature photos, stories, or images of persons with disabilities?

Even in cases where persons with disabilities are included, negative stereotypes about disabilities are often portrayed, or the stories tend to focus on tragedy rather than showing balanced pictures of the lives and realities of people. This lack of representation highlights the important role media can, and should, play in combating ableism and promoting the rights of people with disabilities.

Not all disability is visible.
Although there is a tendency to focus on more visible types of disabilities, it is important to recognize that mental-health conditions, or physical illnesses without readily apparent manifestations, are also significant contributors to disability. Because they are invisible, these types of conditions can be missed or ignored. Also, persons with mental-health conditions can suffer in silence due to invalidation by family, friends, or peers. If one’s personal definition of disability focuses exclusively upon the presence of visible impairment, then it is possible to entirely discount the experience of a significant number of people within the disability community.

Excluding persons with disabilities in the conversation.
Bringing about change and combating the forces of discrimination, victimization, and ableism requires that we all participate in creating a plan of action. Sadly, it is not uncommon for people with disabilities to be left out of this conversation. This might stem from a lack of school or workplace opportunities being afforded to persons with disabilities, which then results in limited representation of their perspective in these types of environments. It is also critically important to avoid tokenism, or including people with disabilities just to say they are represented but not truly listening to or considering their opinions.

From Awareness to Action

While awareness is certainly a start, it’s not enough. Our advocacy for change can begin with educating ourselves on the topic of living with disability, and finding ways to promote both equity in access and the rights and dignity of persons living with disability. Being educated, however, also means being motivated to do something.

During this July observance of Disability Pride Month, how will you commit to promoting inclusivity and belonging for persons living with disabilities? How can you participate in this conversation and work toward reducing ableism in our community? And in the broader fight for LGBTQ equality, are you ensuring that all members of our community are represented?