In my genetic counseling training program we learned about the social and medical models of disability, i.e., does your body disable you or does society’s lack of universal design? This is a great starting point for understanding the complexities of the lived experience of those with disabilities and chronic health conditions, however there are so many other models of disability that are ingrained in our culture, especially in healthcare, that we need to take the time to reflect on. The three I ask people to take a moment to consider are the charity/tragedy model, the warrior model, and the inspirational model. Let’s break these down.

First off, the tragedy or charity model of disability is one that defines disabled people as victims, individuals in need of help, or someone to be pitied due to the “burden” their disability places on them. The best known example of this was the Jerry Lewis telethon, but this narrative can be seen in most fundraising efforts for rare diseases. While rarely put this bluntly, most fundraising efforts boil down to “look at this poor disabled person and their hard life, please take pity on them and donate your money.” Even if it’s not the intention, this narrative positions those with disabilities as less than human, as permanent children, as objects to be helped to make yourself feel better about the “good deeds you did today.” Another example are organizations that pair disabled individuals with non-disabled individuals to be “buddies.” When being your friend is an act of charity, what does that say about your worth or value? What about those with disabilities who aren’t cute and friendly? Do they not deserve your support as well?

The next most common narrative I’ve encountered in healthcare, and the rare disease world in particular, is the warrior narrative, which frames individuals with conditions or disabilities as warriors fighting against their condition.  But when your condition is in your very DNA, we’re framing your own body as the enemy, which can have a big impact on self-image. With this narrative, if you die or if your symptoms impact your daily life, what is implied? That you’re not fighting hard enough? That it’s somehow your fault that you weren’t strong enough to “overcome?” How can we teach children to love themselves, while also teaching them that their body or mind (such in the case of autism) is the enemy?

Lastly, there’s inspiration porn, a term coined by the disability community to describe when non-disabled people use someone with a disability to inspire them. Common examples of this are the news stories shared widely on social media of individuals with disabilities being asked to prom, getting married, participating in sports, or using a mobility, hearing, or visual aid for the first time. These are normal activities that someone without a disability would not go viral for doing, however since the person going to prom uses a wheelchair or the person getting married has Down syndrome, suddenly it is shared by thousands. Why does it make you feel good to watch people live their normal lives? What messages are we sending to disabled people when we applaud them for simply leaving their house, going on a date, or going grocery shopping? It has honestly gotten to the point where many in the Disability community view it as a slur, and personally, I find it less dehumanizing to be called a cripple than to be called inspirational.

Genetic counselors are sometimes an individual/family’s first introduction to thinking about a diagnosis, condition, or disability. We have the responsibility to carefully consider the resources we provide and words that we use, which may frame how this family views their disability/condition for the rest of their lives. 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, but the harder part is checking our own privilege and realizing that we will spend our entire lives unrooting our biases.

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