Disability equality: do we have the needed resolve?

Twenty-six percent is a non-trivial number. Most people would notice it if their salary increased by 26% or if their rent went up by 26%. But the 26% of Americans who have disabilities are difficult to find in classrooms to boardrooms. Despite diversity and inclusion efforts, people with disabilities continue to be marginalized.

Depending on the definition of disability and the age group, about 10% to more than 26% of Americans have some form of disability. The Center for Disease Control and Prevention shows, 61 million (26%) adults in the U.S. have a disability1. Difficulties with mobility (walking or climbing stairs) are the most common (14% of disabilities). Ten percent of working-age (21-64 years) Americans have a disability2. These data show clearly that disabilities impact many lives, yet we hardly see people with disabilities in stores, concerts, schools, and workplaces.


Contributed by Vivian G. Cheung, MD, you can follow her at @Vivian_Cheung2


Disabled people are invisible in our society

I am a doctor and a scientist with a rare disease that affects my balance and peripheral (side) vision. Opie, my service dog gets me around in crowded places. After an injury, for about a year, I used a wheelchair. Before the COVID-19 pandemic, I traveled a lot for my work. It was rare to encounter another traveler in a wheelchair or one with a service dog. As a professor, I have met only a few students with disabilities. As a doctor, I have met even fewer colleagues with disabilities. And as a patient, I have never met nurses or doctors with disabilities.

People with disabilities are invisible in our society. Negative stereotypes, marginalization, and discrimination push people with disabilities to withdraw from society or hide their disabilities. The biomedical community contributed to this problem by framing disabilities as abnormalities that need to be cured. Physical and mental conditions are viewed as “problems”, so when they are permanent, the individuals who bear those disabilities feel deficient or even defective. The healthcare providers feel a sense of failure and instead of supporting their patients, they turn away.

Ableism hurts everyone

Besides the plain fact that any discrimination is wrong, discrimination against disabled people, ableism, costs our economy. Ableism increases medical costs and drains talents. People with disabilities are often given less aggressive medical therapies and fewer treatment options. I like to think that most doctors do not intentionally treat some patients differently. Instead, providers justify by thinking that they do not know how patients with rare diseases or other illnesses react to certain medications and particularly new therapeutics. As a result, people with disabilities are often advised to take a lesser option and told that it is somehow better for them (but not for those without disabilities). When these less aggressive treatments do not work as well, the net effect is a compounding of medical problems and expenses.

Prejudice against people with disabilities drains talent. We should remember that people with disabilities have many ways to contribute to societies – they are scientists, senators, and U.S. presidents. If disabled children do not feel welcome in the classroom, where will the next generation of Stephen Hawking, Tammy Duckworth, and Franklin D. Roosevelt come from?

How to reduce ableism

The path to an America where people with and without disabilities have equal opportunities will be arduous but there are steps that institutions and each of us can take.

What institutions and businesses can do?

Leaders in business, academic, and other institutions must include disability in their diversity effort. It is estimated that about 1 to 2% of doctors have disabilities, well below the 26% national average. Likely this is a result of under-reporting and discrimination. The lack of disabled people in the workforce is not just a problem in medicine, it crosses all industries. It will go a long way if institutions take practical steps in welcoming people with disabilities such as making sure that websites and buildings are accessible, granting accommodation requests, and appreciating the work of disabled employees. Institutions must lead society to overcome its prejudice and not ask disabled people to overcome our disabilities.

A medical resident with a treatment-resistant migraine told me that she had not taken time off despite severe headaches because she is conditioned to feel guilty for not pulling her weight. Disabled people are often made to feel that it is necessary to work harder to get the same recognition. The merit system is often ableist. For example, is in-person work more important than remote work? How institutions evaluate and judge success matters since the assessment criteria reflect its values and set societal goals.

Businesses, schools, hospitals, research institutions have campaigns to diversify the workforce. These efforts so far have paid little attention to bringing in people with disabilities, this must be remedied.

What each of us must do?

Each of us must have the resolve to do our part. I am a physician-scientist; I have received some of the highest honors, including membership to the National Academy of Medicine. I can hide behind my awards and not speak up against the many injustices. Given that I have a disability, I am more vulnerable. I have already experienced my share of discrimination. By speaking up, I put myself and those around me at risk of retaliation and more discrimination. However, with more than 800,000 COVID deaths, and most of the dead are people of color and people with disabilities, I cannot be quiet.

All of us can make a difference by speaking up against ableism and taking action. The saying goes “see something say something.” When we see ableism, we should point it out and take steps to resolve the situation. Everyone has the responsibility to create environments and cultures where disabled people feel valued.

People with disabilities must be represented in all walks of life, including as decision-makers, healthcare providers, teachers, and in the media so decisions are made and carried out with us at the table.

How to access progress

Leaders in business, education, research, and healthcare must be held accountable for the composition of our workforce. Institutions should publish the demographics of their workforce by rank. The failure and success will be clear by the absence or presence of people with disabilities in our classrooms and boardrooms.

References

1. CDC. Disability Impacts All of Us Infographic | CDC [Internet]. Centers for Disease Control and Prevention. 2019 [cited 2021 Feb 28];Available from: https://www.cdc.gov/ncbddd/disabilityandhealth/infographic-disability-impacts-all.html

2. Disability Statistics [Internet]. [cited 2021 Feb 28];Available from: https://www.disabilitystatistics.org/reports/acs.cfm?statistic=1

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