Achieving Inclusivity in Science and Research

Disability identity can look very different, depending on the person. Some people who fall into the various categories identify as disabled, others don’t. Some educate themselves on disability history to fully understand the discrimination they face. Others look to religious or political figures to plan their lives. How you perceive yourself is a reflection of the community where you learned your morals and standards. Disabled or not, your quality of life matters.

The disability community has long been ignored in the push for modern healthcare. Discrimination in areas such as policy and access has prevented disabled people from securing medical coverage or doing so independently. The disregard for universal design practices in architecture, transportation and emergency management infrastructure excludes the functional needs of disabled people.

Disability advocates have made progress in several countries. Yet, even the wealthiest countries with the most expansive infrastructure have exerted no effort in creating equal opportunities for their disabled citizens.

Eugenics is a popular term for the practice of artificial selection in human breeding. Eugenics was first coined in 1883 by British scientist Francis Galton who described it as “the more suitable races or strains of blood a better chance of prevailing speedily over the less suitable.” When World War I began, eugenics had advanced far in the scientific community. Serious scientific progress was being made up until the 1930s. Eugenicists were heavily criticized when it became apparent that the use of eugenics in Nazi Germany was to support the murder of entire races and groups.

New-age eugenics practices include gene-editing human embryos and gene testing/counseling. For example, gene-editing human embryos allow people to implement preferable traits on future generations. This allows for an imbalance of certain groups of traits which could lead to public health problems and societal health consequences. The push for advancements in gene-editing and gene testing appeals to many because companies market genetic engineering as a futuristic cure for cancers and deadly bacteria.

Advancements in science are happening fast, and while there is lots of promising research happening to develop cures for non-preventable diseases using genetic engineering, this science is incredibly unregulated. To change the future, we must look to the past. Understanding new-age eugenics and the consequences can provide detailed insight into how we can use medical technology to cure deadly diseases while respecting those with disabilities.

As medical research advances, clinical trials must expand their information collection to include those with disabilities to give the disabled peace of mind when they take new medicines or treatments. To do that, the medical industry must make efforts to expand their community outreach to the disability community and include disability in their equity and diversity goals. The public health and emergency management sectors of the medical field should understand how much of an impact their role will play in a disaster or emergency. In an event like a pandemic, the plans they laid out in preparation are what will be followed. If those plans are not inclusive of disabilities, then major problems arise.

About Riley Hurt: Riley lives in Salem, Oregon, and uses a Stretto Power Wheelchair for mobility. Riley is enrolled in college, pursuing electrical and computer engineering. She hopes to make her future field more inclusive for people with disabilities. Click here to learn more about Riley.