Today I want to explore disability identity. How we view ourselves internally and within the world has a huge impact on our lives. It is well researched and known that the belief we carry about ourselves, others, and our place in the world dictates our lived experience. Our beliefs become our reality! There have been numerous research studies exploring sexual identity and racial identity but virtually no research has been done on disability identity. It is astonishing that there is such limited knowledge on disability identity given the disability community is the biggest community in the United States with 61 million people living with a disability, which translates to 1 in 4 Americans!
The concept of disability identity is extremely complex and multifaceted given the disability community is the most diverse in terms of age, race, socioeconomic status, and ability. The community includes both mental and physical disability, and within both of these categories there are a long list of varying diagnoses and levels of ability. Our community is rich with a wealth of varying lived experiences that would benefit the research world to understand better. That greater understanding would then benefit every one of us. As the community increases their positive relationship to their identity, we all both within the disability community and the larger community benefit. As each of us feels empowered and proud to live as our true selves we engage in the world in a way that benefits us all and allows us each to express our unique gifts to the world around us.
The ADA has played a critical role in fostering and celebrating disability identity. As our society has attempted to become more inclusive, individuals with disabilities are becoming more willing and inspired to explore the role their disability plays in how they perceive themselves. The process of integrating disability into one’s identity is fluid and every changing because it is impacted by a multitude of factors. Our identity is not a set, stagnant concept. It is continually changing and forming new ways of being and interacting with the world based on where we are developmentally, what type of relationships we develop and how supportive to our sense of self they are, and our exposure to the disability community and our level of engagement within the community. Disability identity is different than racial identity in which a community is built into your family system. An individual with a disability often has to actively seek to find and create their community which requires much more effort and work.
Within our community there are a variety of terms we use to identify and define ourselves. Terminology and the words we use to define ourselves are powerful and can either be empowering or oppressive. Historically the terms used to identify and describe our community have been oppressive and used to degrade people with a disability. This includes the actual word “disability.” The origin of “disability” is negative! Thus, for many the rejection of disability within their identity is natural and makes for a fluid ever changing internal exploration on how we each see ourselves and define ourselves.
Psychology data tells us when the person has a healthy, intact identity their overall psychological wellbeing increases. Those who embrace all aspects of their identity exhibit higher self-confidence and self-worth, which creates vital protective factors for facing discrimination, as well as decreasing anxiety, depression, and self-denigration. Understanding this dynamic has been at the forefront of psychology since its inception. Freud and Erikson dedicated their lives to understanding psychosocial development in relation to one’s perceived identity. When we conduct a psych info search for peer-reviewed scholarly articles on sexual identity we yield roughly 2,000 articles. For racial identity we yield approximately 1,300 articles, but when we search disability identity, we yield less than 75. This means our understanding of disability identity is in its infancy and the completed studies are limited in their applicability for individuals outside of educated, white people with disabilities. (The reason for this is a-whole-nother blog topic I hope to tackle in the next few weeks!)
My personal journey connected to my disability has been complex, ever evolving, and included a number of internal hurdles and struggles to explore. I can remember as a child wanting to disconnect from my disability, fighting hard to be perceived as able-bodied as possible. During this time, I utilized terminology such as “differently abled” or even “handicapable.” As I began to read and study disability history, I began to reject these terms and became an advocate of person-first language. I fought hard to ensure organizations like the APA and the Associated Press wrote using person-first language. I remember many debates about the value of person-first language. And today most of our society perceives person-first language as the “politically correct” way to approach disability.
As I said, my perspective has been continuously evolving. Within the last 5-10 years my perspective has yet again changed. In most situations, I choose to emphasize my disability identity and thus take honor in saying I’m a disabled woman. My disability is something I want and need to be proud of. It makes me creative, hard-working, unique, and most importantly strong-willed and determined. My lived experience gives be a unique lens to see the world and this special knowledge has positively impacted my family, career, and social communities. Rejecting my disability would be rejecting the very part of me that brings richness to all of my relationships and spreads greater understanding and awareness to the various communities I am grateful to be a part of.
Throughout most of my career I tried to compensate for having a disability. I fought the labels of having a speech impediment as defined by the medical field. When I began to embrace my disability as a proud element of who I am, I was able to perceive my speech differently. I no longer had an impediment. I had a CP accent. This specific journey for me has been powerful in how I see myself and my place in the world. I no longer hide from my accent but proudly embrace it as every accent is beautiful and tells a story.
Within the last year I’ve also come to realize each person with a disability has every right to choose how they want to define their disability. For some people, who are navigating multiple identities whether it’s race, gender, SES, religion, sexual identity, fully incorporating these various identities into a cohesive narrative is a fluid process. This means at different stages they may utilize terms such as “differently abled” as their process of embracing disability into their narrative.
A vital part of our identity development is having a sense of community where we feel heard, understood, and accepted. Historically people with a disability have been denied such a place but with the work the ADA and our pioneers in advocacy have done for our community we have continued to grow as a strong, beautifully diverse, supportive community. We have benefited greatly from the courageous, hardworking advocates that have come before us. It is important that we continue this work and continue to be seen. We need the next generation to see the beauty this community holds and stand up as role models to show them that you are only limited by your imagination.
We are a powerful group and our voice has so much to give to the world, which is why understanding our identity is so powerful. Seeing others like us is so imperative; it helps people not feel alone and witness that we are not limited to a set stagnant identity. We are ever changing and evolving. How great would the world be if every person with a disability felt heard, seen, understood and that they belong just as they are. That nothing is wrong or missing within them. That they can be met with kindness and acceptance where they are at within their disability identity narrative and process. At times I am concerned with how our own disability community judges where people are at within their identity journey. I also fear how our systems lead to embracing a cookie-cutter approach to disability and how we force people to prescribe to one term rather than a continuum of terminology. So, I invite you all to reflect and see in what areas can we each grow and expand our awareness, knowledge, and compassion, challenging our internalized biases and meet each person with kindness. Let’s all continue to work to love and care for one another.
With love and kindness,
Alette