by Devin Shuman, MS, CGC
Today marks the 32nd anniversary of the Americans with Disabilities Act (ADA) being signed into law and it is the last week in Disability Pride Month. Most people started today unaware of either of these events and have likely never seen the Disability Pride Flag before. You won’t see companies changing their logo on social media to celebrate their disabled employees and customers. Disability awareness campaigns may be a common part of public discourse, but Disability Pride and the history of Disability culture are less commonly discussed.
Disability Pride Month is recognized in July in celebration of the ADA, which is a law that prohibits discrimination on the basis of disability in employment, state and local government, public accommodations, commercial facilities, transportation, and telecommunications. Signed into law on July 26, 1990 by President George H.W. Bush, the ADA was an important milestone for the rights of people with disabilities. However, disability rights in the US have a much longer history than just the ADA and I encourage everyone reading this to take the time to learn about the larger Disability Rights Movement through resources like the Netflix movie CripCamp, the books listed at the end of this post, and by learning about specific events such as the Capitol Crawl or the Mad Pride Parade. The ADA is a moment in Disability history; it was not the end-all solution and disability discrimination and segregation still exists.
Why do I care about this topic?
- Because 1 in 4 of American adults have a disability, making up over 13% of the general population, and it is the only demographic that we all will fall under at some point in our lives.
- Because countless barriers have led to an immense health disparity where 1 in 3 adults with a disability do not have a usual healthcare provider and 1 in 3 have unmet health care needs due to the cost of that care.
- Because I am a genetic counselor with a genetic disability. I identify as Disabled and work in a profession (genetics) with an entangled history and relationship with eugenics.
As a genetic counselor (GC), I believe that we GCs are in a unique position to dismantle barriers disabled individuals face and to move healthcare away from the historical medicalized approach to disabilities, which views them as a problem to solve or something to pity. Disability Pride Month is important because disability can be more than a diagnosis, it can be a community, a legacy, and a culture with our own art forms and language use. We have these ingrained assumptions that to be disabled is to be unhappy or isolated. But I am capital-D Disabled because this is my identity; one that brings me joy and connects me to a larger movement. Disabled is not a bad word. It is important to remember this, and to remember that disability conversations are not just relevant to patient care, but also how we interact with our coworkers and students.
In graduate training I was taught about diagnoses from the medical perspective, ie. defining a condition by it’s list of symptoms, and this does have an important role in medical training However, only teaching the medical and social model or with case examples of disability culture (i.e., the Autistic and Deaf communities) gives the false impression that various models of disability are optional lenses to try on or a “special-interest” topic. When we view a positive test result as bad news, we’re defaulting to the tragedy model of disability. When we refer patients to diagnosis-focused foundations or organizations run by parents, we are often ensuring that the charity and inspirational models of disability are the first a patient encounters because that framing of disability is best for fundraising. We can do better than this.
I truly believe that the best way to improve how we counsel patients is to improve how we think about disability. Word choice is incredibly important, but just changing how we speak or write while not changing how we think means that we will continue to perpetuate dated and detrimental ideas of disabilities as a problem to be solved. There are some easy changes in word choice we can all apply (see table at the end), but the harder part is checking our own privilege and realizing that we will spend our entire lives unrooting our biases.
Here are some quick gut-checks for ableist biases:
- Have you ever seen a diagnosis on a patient chart, or a long list of them, and thought that this patient would likely be “crazy,” difficult, or a hassle?
- Has your first thought upon seeing a positive test result been about the burden this is going to place on the family or have you started a disclosure with “I’m sorry?”
- Have you shared “inspiring” videos of disabled people completing normal activities such as playing a sport, graduating school, getting married, or the videos of a kid using a hearing aid for the first time?
- Have you told someone with a disability that you “get it” because you did a training about their condition, you once had to use a mobility aid after an injury, or you know someone with a similar condition?
- When a patient doesn’t fit the textbook definition of a condition or does not provide an organized/linear medical or family history – have you considered that they are making it up or shouldn’t be believed due to being a “poor historian?”
- Have you made the assumption that all disabled individuals would want a cure, treatment, or therapy (such as those designed mask symptoms)?
- Do you use disability slurs like stupid, lame, dumb, idiot, blind, deaf, crazy, or insane, such as in reference to a politican you dislike?
We often discuss disability rights only in the context of prenatal or preconception counseling, but being disabled is complex. It intersects with every single aspect of your life, and your relationship with it may change through every stage of your life. Within our current society, even existing in the world as someone disabled can be a radical act. I think as a GC, we often want to make things simple and easy for our patients, but we cannot fear the complex and our patients won’t be able to avoid their own complex interactions with society.
I’ve seen genetic counselors dodge talking about mental health family history and avoid testing that may result in variants of uncertain significance – and I truly believe this often stems from a preconceived notion that uncertainty is, by default, a burden. If we can’t offer a “cure” or a yes-or-no answer we may get uncomfortable or feel like we’re failing our patients and then assume our patients will also be uncomfortable. However, as someone with a progressive genetic syndrome, my entire life is uncertainty. We all carry thousands of genetic changes and dozens of genetic conditions – and we need to normalize that for our patients. All of our lives are uncertain, and uncertain results may make a genetic testing result a living document – something they can track and follow-up on, instead of a stagnant negative result. We need not shield our patients from this normal part of life based on the belief that genetic uncertainty is exceptionally difficult.
Providers may warn patients to avoid social media, however that is also where a disability identity and second-family may be found. Providers may not want to “burden” patients with too much information, though who gets to decide what information should be included? We put patient autonomy and informed consent as a top priority, but the medical field also will often restrict the rights of disabled patients, for example from deciding to transfer an embryo with a genetic syndrome during IVF. Sadly I think we’ve all heard stories of providers who have recommended a patient proceed with termination on the basis of a genetic diagnosis, or assume that if a pregnancy-related genetic screen is positive the next “logical” step is additional testing, such as a CVS or amniocentesis for “definitive” predictive information. However, this puts an immense weight and emphasis on a test result – do they really give “yes or no” answers or holistic predictions about someone’s future? I think we all know that’s not true, and a genetic diagnosis (or lack thereof) is only one detail of a pregnancy or the life being created. All pregnancies and futures are uncertain, that’s one of the joys of parenthood – very few things can truly be predicted. Our patients deserve the agency of making these decisions for themselves, with information that’s not focused on easing the conversation at that moment or asking for an immediate decision. Our training makes us especially equipped to fight the patronizing approach of doctors knowing “best,” that was the norm in medicine for so long.
We are uniquely positioned to provide validation and support for our patients during the diagnostic odyssey, as we often have time to build those relationships and can be involved in the consent and disclosure process for genetic testing. To maintain our ability to support patients, we need to remind everyone that there is value in time spent with patients and push back against the increased pressure to shorten that time or have patients make decisions based on one-session with a GC. We need to remind ourselves though that all patient reactions are normal – being overwhelmed, disorganized, confused, stress-free, happy, or proud. Our patients are not less validly disabled if they can work or if they’re on SSDI, if their disability is visible or invisible, if they have a known genetic etiology or not. What is not valid is for GCs to feel we have learned “enough” about disabilities, to approach a patient starting from a position of skepticism, to feel like some disabilities are more legitimate than others, or to think that we aren’t ableist because we may feel like we are more of an ally than other health professions. We are ALL ableist, even those of us who are also Disabled.
One class in our training, one sponsored webinar, one panel at a national conference – none of these are one-stop-shops for retraining our brains to remove entrenched ableism. I like the garden metaphor for our brain – we can’t always choose what was planted as we were learning, it’s not always our fault if weeds flourished when we weren’t looking, however it is our responsibility to take the time to dig out those weeds and to nurture the plants we want to grow. Is weeding out ableism difficult? Yes. Is it sometimes embarrassing to realize what biases have grown in our minds? Yes. Will we spend our entire lives weeding? Probably. But that’s a good thing! When we recognize that we have a lot to learn, that we all are ableist, that this is a never-ending learning process, that is where we find our power to change and our forgiveness for our past self’s ignorance.
|Instead of using:
|Common, often, usual, expected, unaffected
|Broken, bad, atypical, mutant, defective, impaired, abnormal
|Not working, non-working, different, unique, variant, affected
|Chromosome variant, condition, aneuploidy/specific change tested for
|Risk of a condition
|Chance of a condition
|Reports, Does not report
|Describe barriers in access to care
|High functioning autism, Asperger’s syndrome
|Autism without an intellectual disability or history of delays, with history social milestones delays, PDD-NOS, autism spectrum disorder
|Addiction, Alcoholic, “drug user”
|Substance use disorder/alcohol use disorder
|Structural congenital condition, be specific if possible
|Mental illness/mentally ill
|Mental health condition, be specific if possible
|Use specific diagnoses instead
|Hearing or vision impairment, impaired hearing or vision, blind
|Hearing loss, hard of hearing, low vision, decreased vision
|Describe barriers in access to care
|Retardation, cognitive impairment
|Intellectual disability, global developmental delays
|Situation dependent speech, does not verbalize, non-speaking
|Handicapped, handicapable, dis/ability, disAbility, differently abled
|Disabled, with a disability
|Special education, special needs
|Disabled, has an IEP/504 plan, receives additional supports in *** subject areas, support needs **
|Wheelchair user, uses mobility aids *list them out
|Caregiver, when referring to parents of disabled adults
|Parent, personal care assistance provided by their parent for *** activities
|Short stature, has dwarfism, little person
*Many of these are context dependent and so it may be okay to use certain words in certain contexts, some may also be reclaimed or the preferred term by individuals.
Related Reading – contains only books I have read, so is not a comprehensive list:
- Demystifying Disability: What to know, What to Say, and How to be an Ally by Emily Ladau – A quick easy read
- Disability Visibility: First-Person Stories from the Twenty-first Century by Alice Wong
- Care Work: Dreaming Disability Justice by Leah Lakshmi Piepzna-Samarashinha
- Being Heumann: An Unrepentant Memoir of a Disability Rights Activist by Judith Heumann
- About Us: Essays from the Disability Series of the New York Times by Jonathan Todd Ross
- The Boys in the Bunhouse: Servitude and Salvation in the Heartland by Dan Barry
- Imbeciles: The Supreme Court, American Eugenics, and the Sterilization of Carrier Buck by Adam Cohen
- What Doesn’t Kill You: A Life with Chronic Illness – Lessons from a Body in Revolt by Tessa Miller
- Haben: The Deafblind Woman Who Conquered Harvard Law by Haben Girma
- Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain by Abby Normal
- The Puzzle Solver: A scientist’s Desperate Quest to Cure the Illness that Stole His Son by Tracie White
GC and Disability related books (may contain outdated terms and references):
- Choosing Children: Genes, Disability, and Design by Jonathan Glover
- Genetic Dilemmas: Reproductive Technology, Parental Choices, and Children’s Futures by Dena Davis
- Babies by Design: The Ethics of Genetic Choice by Ronald Green
- Telling Genes: The Story of Genetic Counseling in America by Alexndra Minna Stern
- Fables and Futures: Biotechnology, Disability, and the Stories We Tell Ourselves by George Estreich *Recommended by other GSF GCs
https://ncd.gov/sites/default/files/NCD_Genetic_Testing_Report_508.pdf *included though not a book
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