FEATURE

Disability and Stigma

 

Disability is often perceived by society as a negative experience and something unwanted. As marriage and family therapists, we are accountable for our stigmas and biases towards disabled clients and their families. According to Ellingson and Quinlan (2014), the community of people with disabilities (PWD) is expanding more quickly than any other minority group worldwide:

More-over, this group is one in which many, if not all individuals, will eventually join due to accidents, injuries, illnesses, wear and tear on aging bodies, and genetic factors. Disabilities can be physical, cognitive, social, and/or emotional. The disability community overlaps with people of all races, ethnicities, age groups, genders, sexual orientations/expressions, and socioeconomic statuses, although PWD are overrepresented among people who are economically disadvantaged and under-served in health care, environmental safety, nutrition, and other basic needs. (p. 332)

It is vital that we, as therapists, learn to better serve the disability community. Any client may become a member at any time.


Stigmas with disability

When it comes to the disability community, empathy is not necessarily the first response able-bodied people experience. PWDs more often receive sympathy and pity when approached in the beginning. Chris Bateman (2008) describes how more than once, while drinking a can of Coke and waiting for his girlfriend to finish shopping, people passing by have stopped to drop coins into his soda can. There is a lack of visibility and understanding of PWDs in the real world. Bateman believes the failure to integrate PWDs into the mainstream are often what is to blame for such discrimination.

Being disabled might not be so hard if the world viewed PWDs as equals. According to Sarah Earle, people with disabilities are often viewed or treated negatively due to societal stigmas, which she defines as a powerful disparaging label that can change and destroy the way in which the individual is seen (2003). Goffman (1963, as cited in Earl, 2003) believed that a person’s disability is the first thing that is seen by society, no matter what they accomplish. This can have an extremely negative impact on how people with disabilities value themselves.

Societal stigmas on disability have even been written in law. The disability community is currently overcoming and recovering from a despicable law where PWDs were not even allowed to be seen in public due to not looking “normal.” For PWDs, these negative outlooks and societal stigmas can cause a lot of trauma and internalized hatred. Laws such as these are still very recent. According to Jasmine Harris: “Perhaps the most overt form of the law’s historical concealment of disability, municipal ordinances—known collectively as ‘ugly laws’—prohibited people with disabilities from appearing in public places. These laws appeared as early as 1867 in San Francisco, California and have served as grounds for a civil citation as recently as 1974 in Omaha, Nebraska” (2015, p. 466).

People with disabilities are often misunderstood. MFTs can offer a welcoming and open-minded approach. As therapists, it is important to model strong support and fight stigmas. Supporting the disabled population in therapy may take a lot of self-reflecting on the therapist’s part. A therapist may unknowingly add to the stigmas of PWD as broken or in need of fixing. Ideas and thoughts that the disabled person is inadequate compared to an able-bodied person may permeate the therapeutic relationship.

As therapists, it is important to model strong support and fight stigmas. Supporting the disabled population in therapy may take a lot of self-reflecting on the therapist’s part.

As a woman with congenital muscular dystrophy, I have seen my share of therapists. I have also personally experienced the impact of societal stigmas. I was once deeply impacted by a therapist’s assumption that, as a disabled woman, I must not be living a full and happy life. Another therapist presumed that others may not be attracted to me due to my disability. These, and many other harmful assumptions, may pervade the therapeutic relationship and challenge rapport.

It is crucial that therapists take a step back and look at their own beliefs and expectations on disability, different types of disability, and reactions with this population. Disability should not be viewed as a negative, but just as part of a person’s life. It is helpful to strive for an understanding of how disabled people see themselves. Empathy, not sympathy, is key to breaking down those societal beliefs.

Disability and families

Looking through a systemic lens, disability often affects the entire family. Children with a disability are quite common and parents are often unprepared. According to O’Connell, O’Halloran, and Doody (2013), multiple studies have derived that parents of children with a disability, especially mothers, experience more stress, higher levels of anxiety, increased sadness, and a sense of denial and guilt (2013).

Man in wheelchair arms up while woman climbing on wall.

Siblings of children with disabilities are often overlooked. They are also affected by the disability in the family. According to Linda Gilmore et al. (2012):

Parental attention may, at times, be focused more on the needs of the child with a disability, and there may be high levels of stress within the family. Siblings can experience difficult emotions and feelings about their brother or sister and the family situation. Feelings of guilt, grief, confusion and anger are not unusual. Siblings may be afraid to tell their parents how they are feeling, or they may worry about adding to the difficulties and stress already faced by their parents (p. 2).

MFTs play a vital role in creating a safe, calm, and understanding space for families of children with disabilities. These families need a great deal of guidance and validation. Each member, regardless of disability, has so much to offer as a person and an important part of the family structure.

Having a child with a disability should not be framed as something negative. Focusing on the disability as the main source of a familial problem may only serve to obscure the bigger picture. It is, however, important to reflect with the parents on how difficult and stressful their experiences can be at times. Therapists can help the client and family see how they are separate from the disability. Finding these strengths within the family rather than working around how to live with the negative aspects of disability, may yield better results.

Doing grief work with families of a disabled child can be greatly beneficial. Olshansky (1962, as cited in Kandel and Merrick, 2003) describes how it is normal for parents of a child with a disability to grieve due to the perceived loss of the healthy child they had expected. Grief work can also be done with the child. As a member of the disabled community, I have often discussed this issue. Many PWDs grieve the body they will never have. The grief process may be experienced cyclically and indefinitely throughout the search for acceptance. Grief work with the whole family can be crucial to moving forward.

A therapist may unknowingly add to the stigmas of PWD as broken or in need of fixing. Ideas and thoughts that the disabled person is inadequate compared to an able-bodied person may permeate the therapeutic relationship.

How therapists can help

When working with the family of someone with a disability, therapists should be cognizant of using proper language to describe the person with the disability. This affects not only the disabled person, but the entire family. According to Stuntzner and Hartley (2014):

Counselors have a professional responsibility to be cognizant of their own word-choice and use of terms when referring to persons with disabilities and its potential impact. More specifically, they need to be mindful of whether they view the person as an individual who has the same rights, needs, and desires as anyone else or if they perceive him as incapable, weak, less than, suffering, pitiful, handicapped, or physically/mentally challenged and so forth (p. 3).

It may also be important to understand the personal and societal barriers PWD face when choosing a specific theoretical framework. Being cognizant of these challenges is extremely important in building rapport and providing validation. Balva and Tapia-Fuselier Jr. (n.d.) propose many different suggestions for therapists on what to do for disabled clients to make them feel more included and welcomed. Consider expanding your own understanding of how to best serve people with disabilities, the cultural perspectives of their support network, and available resources. Take the time to create the most accessible environment possible; focus on the details such as paperwork process, entrance area, or even the overall office layout. Be mindful of these barriers. There are many ways to make every client feel included. The main goal with clients with a disability is to make them feel like any other client.

Many PWDs grieve the body they will never have. The grief process may be experienced cyclically and indefinitely throughout the search for acceptance. Grief work with the whole family can be crucial to moving forward.

As MFTs, our clients may be children, adults, elderly, couples, or whole families. Any of these clients may find themselves as members of the disability community. To support this growing community, MFTs have a unique responsibility in expanding awareness. It is necessary to develop our understanding of how a disability may impact a client’s experience. With growing support, we can improve our therapeutic relationships, better understand families with disabilities, and fight negative societal stigmas. Inclusivity is what bridges the gap between being seen and not seen. It is important to be inclusive of all types of people. Anyone can become disabled.

Briana Mills

Briana Mills, MSMFT, is an associate marriage and family therapist and an AAMFT Pre-Clinical Fellow. She graduated in 2019 at California State University, Northridge. Mills is living with muscular dystrophy and has experience with chronic illness and disability. She is currently accepting clients through her work with the Liberation Institute. In the future, Mills plans to open a private practice focusing on the disabled community in an effort to expand access to care to such an underserved population.


REFERENCES

Balva, D., & Tapia-Fuselier, J. L., Jr. (n.d.). Working with clients with disabilities. Retrieved from https://societyforpsychotherapy.org/working-with-clients-with-disabilities/

Bateman, C. (2008). Lack of humanity our biggest disability. Retrieved from https://core.ac.uk/reader/230870633

Earle, S. (2003). Disability and stigma: An unequal life. Retrieved from https://core.ac.uk/reader/81918

Ellingson, L., & Quinlan, M. (2014). Disability. Retrieved from https://core.ac.uk/reader/215442137

Gilmore, L., Waugh, M., Haynes, A., Hearne, C., Mercer, C., & Wilson, K. (2012). Supporting siblings of children with a rare chromosome disorder. CORE. Retrieved core.ac.uk/reader/10912736

Goffman, E. (1963). Stigma: Notes on the management of a spoiled identity. Englewood Cliffs, NJ: Prentice Hall.

Harris, J. (2015). Processing disability. Retrieved from https://core.ac.uk/reader/235410007

Kandel, I., & Merrick, J. (2003). The birth of a child with disability. Coping by parents and siblings. Retrieved from https://core.ac.uk/reader/205925977

O’Connell, T., O’Halloran, M., & Doody, O. (2013). Raising a child with disability and dealing with life events: A mother’s journey. Journal of Intellectual Disabilities, 17(4), 376-386. https://doi.org/10.1177/1744629513509794

Stuntzner, S., & Hartley, M. (2014). Disability and the counseling relationship: What counselors need to know. Retrieved from https://www.counseling.org/docs/default-source/vistas/article_09.pdf

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