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Discarding the “Disability Mindset”

February 26, 2019 by Etta Hornsteiner in Care Management, Crisis Intervention, For Individuals, For Professionals, Guardianship, Intellectual Disability, Mental Illness, Power of Attorney, Special Needs Care

man with disability running in the olympics-discarding disability mindset

Justin was first diagnosed with a disability in the form of ADD (attention deficit disorder, now known as ADHD, or attention-deficit/hyperactivity disorder) at the age of 5 years. The diagnosis resulted in his removal from a regular classroom environment to special education classes. Justin’s parents were informed by Justin’s educators that he probably wouldn’t graduate high school, much less college.

Years later, as a young adult, Justin developed Meniere disease (an inner ear disorder), which affected his hearing and balance. The onset of the disorder left Justin with the scary reality that he could permanently lose his hearing at any time. Justin recalled a former supervisor taking advantage of this knowledge with an inappropriate prank: While speaking in a one-on-one meeting, the sound from the supervisor’s mouth abruptly halted, while his lips continued to move. Justin thought he had gone deaf—until the supervisor started laughing, which Justin could hear. Behaviors like the one above took their toll on Justin’s confidence; yet, he knew he could contribute in society.

Spurred in part by adversity, Justin went back to school, earned a business degree, and shortly after, entered the commercial marketing industry. However, despite his education and experience, Justin was still regularly subjected to the same stigma. Many of Justin’s work experiences over the course of his career left him feeling ashamed, guilty, offended, and, sometimes, even intimidated. Rather than instilling confidence, work left him demoralized, simply because he was differently abled.

In July of 2013, everything changed for Justin. He joined the Centers for Disease Control and Prevention as a contractor in the Division of Human Development and Disability at the National Center on Birth Defects and Developmental Disabilities. Justin’s colleagues put an emphasis on making him feel comfortable and respected as a member of a diverse and productive workforce. They welcomed Justin’s diversity, positively contributing to his overall health (Disability and Health Stories from People Living with a Disability).

Disability a matter of perception

We need more stories like Justin’s to help change society’s perception of disability. “Disability is a matter of perception. If you can do just one thing well, you’re needed by someone,” champions Martina Navratilova, a professional tennis player and coach. The Centers for Disease Control recognized Justin’s strength in helping others. But they did not just acknowledge his strength, they gave him a place where he could thrive. Too often the word “disability” comes with a focus on limitations and weaknesses because of our perception. Lennard Davis, a nationally and internationally known American specialist in disability studies, points out that the ‘problem’ is not the person with disabilities; the problem is the way that normalcy is constructed to create the ‘problem’ of the disabled person.” Davis is inadvertently asking us to consider our concept of normalcy. Could it be that what is considered the norm is ever changing along with life?

What we know for sure is that we need a perceptual shift whether we are parenting, teaching, leading, or caring. The human experience is not limited to certain life events. It is inclusive of all human experiences involving the emotions. There are no good or bad experiences. These are labels we attach in hope to understand our stories in life.  Additionally, Heather Lanier, mother of a daughter with Wolf-Hirschhorn syndrome, shares in a TED Talk that our labels or judgments are really incomplete stories we tell ourselves.  She outlines her struggle to find her complete story:

I had a choice. Like a person offered to swallow a red pill or a blue pill, I could choose to see my daughter’s differences as bad; I could strive toward the goal that her therapists called, “You’d never know.” They loved to pat themselves on the back when they could say about a kid, “You’d never know he was ‘delayed’ or ‘autistic’ or ‘different.'” I could believe that the good path was the path that erased as many differences as possible. Of course, this would have been a disastrous pursuit, because at the cellular level, my daughter had rare blueprints. She wasn’t designed to be like other people. She would lead a rare life. So, I had another choice: I could drop my story that neurological differences and developmental delays and disabilities were bad, which means I could also drop my story that a more able-bodied life was better. I could release my cultural biases about what made a life good or bad and simply watch my daughter’s life as it unfolded with openness and curiosity.

Lanier accepted a mindset without judgments. She chose not to try to figure out life for her daughter or to accept the status quo but to allow her daughter’s life to unfold naturally before her.

Mindset of possibilities

Naming does matter because when we name, we define. Could we reframe our idea of disability, then? I am sure redefining disability has been the quest of many advocates over the years, and although we have made progress, there is still much work to be done. For not only do parents such as Lanier play a pivotal role in the development of their children, but teachers and social workers as well.

Drawing upon its neuroscience roots, neurodiversity focuses on creating environments where individuals with disabilities can grow. “For example, a person with autism spectrum disorder may function at a level surpassing a typically developing individual when working at a job that capitalizes on the ability to discover tiny errors in computer code, as has happened with employees at the Danish software company” cites Educational Leadership.

Being able to accurately assess strengths and needs in order to determine what kind of support systems are required to help persons with disabilities achieve their goals becomes key in creating a mind shift from disability to diversity. It is about developing human potential; and the social worker, for example, must be acutely aware of this in order to provide the best programs that will serve their clients.

Take-home message

Our professional care managers at Intervention Associates are trained social workers who specialize in special needs. They understand this diversity, so they create unique plans to meet their clients’ needs. They are familiar with a wide range of resources that will help strengthen and discover abilities within their clients.

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