Let me start by saying, I love my field. I truly do. I think of the world of our profession and the people who have dedicated their lives to this career. I am critical of it, because I care about it so deeply - and about the members of our community and their experience within it.

This weekend the annual national genetic counseling conference takes place in my hometown, and I’m not going to lie, it’s emotional for me. As a self-proclaimed “extroverted extrovert,” medical and rare disease conferences used to be my favorite “vacation” of the year (and I’m not joking when I say that). However, due to COVID and being severely immunocompromised instead of being excited, I’m struggling to not sad spiral. They’re just another part of me I lost to my genetic condition.

Except, here’s the thing – was it my genetic condition’s fault? My mitochondrial disease is definitely at fault for my joke of an immune system but at the end of the day, if we lived in a society that cared for our neighbors and prioritized the community over the individual – I wouldn’t need to be isolating from the world for over 5 years now. This really comes down to the basics of the medical versus social models of disability and universal design.

I’ve mostly come to peace with the world not caring enough about my life and the lives of my friends to wear a little piece of cloth over their face, but it still feels like a gut punch when I’m reminded that my own communities that should “get it” the most – don’t. When both the mito community (parents, providers, and organizations) and the genetic counseling field, which is specially trained in compassion and advocacy for rare disease patients, refuse to take basic precautions, that is what still makes me cry after 5 years of coping with this nonsense.

I don’t write this as a pity party. I don’t want your pity – but I do want you to face the reality of your actions. To not be able to look away from the message your actions send to not just your patients but to your Disabled friends, colleagues, and community. Because Disabled people are also healthcare providers and all we’re asking for are really freaking basic safety measures such as not coming to events sick, taking a cheap COVID test, and wearing a mask.

Beyond just the COVID, over-played and ignored, song and dance – trying to help our profession as a Disabled GC has been a truly ironic experience. I have honestly been really fortunate to have so many professional opportunities in our field but I do want to also be honest about the ironic ableism I’ve faced as well. Since vague “concerns” are easier to dismiss, I’m going to share two concrete experiences that occurred over the last year or so:

1.      I was honored to be a part of NSGC’s Disability Position Statement update as a “community stakeholder” as I do truly believe in our field and that we’re moving in the right direction when it comes to DEIJ, slowly but surely. However, when we (the Disabled GC community stakeholders) requested accommodations, we were told they couldn’t be provided. While NSGC volunteers did a decent job of learning some accessibility basics during this process, such as saying their name before speaking (so individuals who cannot see who is speaking can follow who said what), when it was requested that a recording of each meeting be shared with participants so they can listen back later was rejected. For those who are unaware, the process of rewriting a position statement involved Zoom meetings with a shared document everyone edits with screensharing, so (in theory) everyone could see the edits being suggested in real time and workshop them together. This approach leaves individuals who cannot see a screen, or who may have trouble remembering exactly how things said out loud were specifically phrased (like me), trying to play catch-up and multitask. When we pushed back about recordings being “a necessary step to make these meetings accessible” we were told that just isn’t possible due to legal concerns of someone potentially taking the audio, doctoring it, and misrepresenting what happened during the meeting.

 Disabled people are sadly used to institutions being inherently inaccessible systems, and yet the irony of our team writing the exact words “NSGC supports inclusive…policies and practices… strives for universal design and advocates for all collaborators to prioritize inherited accessible systems, communications, and technologies” while refusing to do so was hard to process. NSGC’s leadership  (since we ran it up the chain of command) completely missed the opportunity to put their money where their mouth is and provide “continuous evaluation and adaptation of practices to support the disabled population.” (to quote our statement) I explicitly made the NSGC staff state that they are prioritizing a theoretical legal risk over an accessibility need while writing a document stating they would prioritize and center the exact individuals they weren’t prioritizing or centering. Which they weren’t thrilled to say it, they eventually did point-blank admit that is exactly what was occurring. Honesty was the least we could ask for at that point.

2.      For last year’s GC conference, I was asked to be part of two early-breakout sessions, both of who requested I be a remote panelist to speak about ableism in genetics. One request was denied out right, while the other group was given the go-ahead. However, within a month of the event, after the entire presentation had been prepared and practiced, the second group was told I actually couldn’t participate. We clarified it was a needed ADA accommodations that we had confirmed already could be provided, however were told it’s actually “too difficult” (despite having done it in previous conferences). I feel beyond fortunate that the group I was working with went rogue and I was able to participate virtually anyways by playing my recorded talk on the screen and having a laptop set up on the table so I could answer audience questions (which went off without a hitch FYI).  Again, the irony isn’t lost that when asking to do free labor to educate GCs about being a Disabled GC, I was denied basic accommodations that are very doable but just didn’t want to be prioritized.

The Disability slogan “Nothing about us, without us” doesn’t include “only when it is convenient for you.” Accommodations are not favors someone is requesting, they are opportunities for you to offer basic human decency to another person. I’ve gone through all of the stages of grief multiple times over the last 5 years, but anger doesn’t fix anything – so I’ll continue to volunteer my time to our profession to try and make the path for the next Disabled GC easier. I’ll continue to write blog posts that make me cry while writing them so that hopefully another person reading this won’t feel so alone. Every time I write a post like this, I find new friends who read the piece and see their own experiences mirrored there, and so I’ll keep writing and sharing my truth. To be honest, we kind of end up trauma bonding but hey – what stronger friendships are there?