A Boys Club: The Exclusivity of Disability as a Gendered Experience
Part One of Three: Infertility in the Disability Space
The rhetoric that surrounds disability and disability studies is vast and diverse. Not only is the terminology influenced by cultural context, it is shaped largely by the perspectives of whomever is putting forth a given definition — from doctors to policy analysts to educators. And due to the intricacies that separate one definition from the next, it has become increasingly difficult to pinpoint what exactly is considered to be a disability in today’s day and age. Let’s take a look at some of these definitions.
The U.S. government alone offers up a number of its own definitions, each dependent on the legal context in which it exists.
Take, for example, the definition of disability used by the Social Security system: “the inability to engage in any substantial gainful activity (SGA) by reason of any medically determinable physical or mental impairment(s) which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months.” This is viewed as one of the stricter definitions, more focused on the duration and fatality of the disability than on the experience itself.
The U.S. Department of Labor classifies degrees of disability on the basis of severity: temporary total, temporary partial, permanent total, and permanent partial. These classifications ultimately dictate the quality and quantity of benefits that those qualifying as disabled receive through Workmen’s Compensation.
The Americans with Disabilities Act (ADA), on the other hand, takes a looser, interpretable approach to defining disability, delineating it as “a physical or mental impairment that substantially limits one or more major life activity.” But what is a major life activity? Getting a job? Marriage? Travel?
Positing an even broader definition, the World Health Organization considers disability to be an “umbrella term” that includes “impairments, activity limitations, and participation restrictions.” This definition succeeds in its inclusivity; it acknowledges that disability is not solely something that impacts the body, but something that results in far-reaching shifts in social life.
However, the United States opts to use the definition offered by the ADA as the general standard (with flexibility in different contexts, typically utilizing narrower definitions as needed). The consistency among these definitions is the vagueness in language; this puts a lot of power in the hands of those who administer them in legal contexts. Lawmakers, employers, and insurance companies take advantage of the vague language in order to essentially pick and choose who receives the benefits of a “person with disabilities.” What we’ll end up seeing is that women of color and women of low socioeconomic class end up bearing the brunt of the inequality and injustice that ensues consequently.
When you take apart the word disability itself, you’re left with two roots: dis- and –abilis, meaning not and able, respectively. Thus, in its simplest form, disability means not able, in whatever capacity it may be referring to. Under this phrasing, the inability to see, the inability to eat a certain food, should all be considered a disability. Parts 2 and 3 go into greater depth about how even the looser definitions for disability end up becoming more and more limited as administering actors get involved.
Sure, this word has varying levels of severity; but to remove the experience of having a disability in the first place from someone is unjust and ultimately quite ableist — with people like those aforementioned doctors, analysts, and lawmakers, the majority of whom have never experienced disability, picking and choosing who can take on that title. Problematically, our society has tried to homogenize the experience of disability, to limit it to a small subset of people — all with the goal of cost-efficiency in mind. From this perspective, not only does our legal system aim to homogenize and discredit the experience of disability, it does so on existing lines of structural inequities as well.
This is evidenced when accounting for the “double discrimination” that women with disabilities face; given the two forces at work — disability discrimination and gender discrimination — disabilities that fall exclusively within that intersection are often ignored or subject to discrimination in the same ways as those who claim them as their own.
The following components of this three-part investigation apply the root definition of disability — not able — and its manifestation as a gendered experience to the condition of infertility. While the experience of infertility is truly an intersectional one, with race and socioeconomic status undoubtedly playing a role, this series will focus primarily on the experience of women with disabilities as a marginalized subset within an already marginalized community. I will be looking at how infertility is classified in a policy setting, the implications it has on cultural/societal reception of the issue, the accessibility of treatment-based resources, and what this means for the future. Ultimately, the interaction between infertility and the disability landscape is muddled due to structural obstacles, like gender discrimination, that prevent it from receiving the attention it deserves.
