Written by Christina Coates, HODA Board President

I am new to the disability community. I am learning what that really means daily. I’m learning about communication and advocacy in the disability space. I’m also learning about the community as a whole and even the dreaded “disability porn”. The learning curve on many of these issues has proven steep.

In fact, when I posted a blog during Disability Awareness Month, I was publicly called out for using an old version of the awareness flag by a person that is thought to be a leader in the rare community. Speaking on newly acquired disabilities should be a safe space, and not so rigid that a person feels less than or humiliated for speaking to their feelings around this new fact in their lives. That post also garnered a private, direct message from a special friend informing me of the mistake I made. Her approach felt warm and genuine, and it felt like the right thing to do. The public shaming was an unfortunate incident which has clearly sat in my subconsciousness for longer than it should. 

Do I hope that the person reads this and thinks on their behavior and makes a thoughtful change in their behavior? Yes. Yes I do. That person held such a power over me with their inconsiderate public shaming that I honestly considered resigning from HODA and isolating. Thankfully, that was only a fleeting thought, and I eventually came to get past it and move forward.

Where do you fit into the disability community?

It has occurred to me lately that there are a few different types of people in this rare disease world. We have the person who gains a diagnosis and seeks to forget about it and move on with their lives. We have the person who gains a diagnosis and uses that for constant adoration and encouragement from others.  And finally, we have the advocate. This is the person who gains a diagnosis and immediately puts their story out into the ether, finds community, and makes it their life mission to help others in their shared situation. I didn’t know that I was the third type, but here I am. I am active inside of both the Cavernous Malformation community and the Hypertrophic Olivary Degeneration community. It doesn’t make me special or a role model. It is how I deal with the hopelessness and the massive void that I have been thrust in to.

With this new understanding, I have also noticed that the media really loves a good story. When I share my story, I do so for a few reasons. First and foremost, I know that when I was first diagnosed, I needed to see others like me and understand better what to expect, and I had a real desire to understand “Why me?” My other motivation is simply to spread awareness. I want people to know that these things can happen to anyone. No one is exempt from this lottery. It can happen to you, your child, spouse, or parent. It doesn’t matter if you are financially able to deal with therapies and disability. And it doesn’t matter if you live in a mansion or a shack. These rare diseases do not respect titles or salaries. They just happen. 

I began noticing that at least once a week, most US national news outlets feature at least one “feel good” story. It became very clear to me that the motivation of the media is far different from the motivation of the person featured in the story. If I am being completely honest, “On the Road with Steve Hartman” on CBS comes to mind. These stories used to make me feel so grateful that I didn’t have THOSE circumstances to manage. Now, as I watch through the lens of a disabled woman, they make me angry.  

Presentation matters

I understand why these stories carry an appeal. These stories are important, but not in the way that they are presented. It is important to see ourselves reflected in others to grant us the courage to continue. However, I disagree with the ‘disability porn’ that they are truly presented as. To me, disability porn is using a person’s circumstances to make the general population feel sorry for the person, and as a bonus, to let those folks find gratitude that they don’t have it so bad. Basically, using a person’s life to make you feel better about your own is ‘disability porn’, and really should not have a place in modern society. 

I hate that even the disability and rare communities will sometimes participate in disability porn to gain more charitable donations or get more eyes on their community. This is especially grievous when organizations use children as pawns in this strategy. Children rarely have a choice in the matter. I truly honor parents who share their children’s stories without that ‘feel sorry for my kid’ vibe. I appreciate the parents that will refocus the lens on the caregiver’s story and not telling the child’s story, respecting their autonomy.  

I’m certainly not the judge, jury, and executioner on anyone’s choice on sharing their stories and getting the word out. I only have control over how I share my story, present myself in the community, and how we, as the Governing Board of HODA, present our community stories. We do not seek to use our community as ‘poor us’ pawns. We share our community stories for the newly diagnosed to have a safe place and feel at home with us. 

So, how can you advocate for sharing the right way?

We most certainly need funding to realize our goals. Sure, we can do this with factual storytelling. We do not need for anyone to feel sorry for any of us to achieve our vision. I recently had a family member tell me that they feel sorry for me. When I pointed out that I am thriving in this new life and asked for the reasoning behind their feelings, they were unable to explain the comment and the phone call quickly ended from there.

That is certainly a topic worth pondering, isn’t it? Why do people feel sorry for those with disabilities? Do we feel sorry for those we percieve as worse off that we are? Isn’t that a form of bias? Are we all incapable of truly remaining un-biased, even within the disability community? There is no disabled life olympics. No one is giving out medals for the “best” or “worst” of disability life. How could they? What one may percieve as a “worst” disability might be an annoyance or even privilege to others, right?

You can see how quickly this topic can get out of hand. You can see how complex this issue is. It can be near impossible to stop the comparison once it starts

What are your feelings about disability porn?  Let me know in the comments!