I Experience Disability – You Just Can’t See It

In honor of Disability Pride month – I’m going to do something a little vulnerable. I want to talk about unseen disability.

For a brief moment a couple of years back, I served as an Interim Director for the Pacific ADA Center at Public Health Institute. Their Director had transitioned from the role and I stepped in until their new Director was found (her name is Jerri Davison and she’s amazing BTW). I learned more from that team than I can take space here to write about – about the ADA and so much more. They truly are a great group of folks who are dedicated to ensuring accessibility for all people and to offering education about disability. 

One of my take away’s from my time with them was related to invisible disability – the ways in which our ability to navigate the world may be impacted by things others cannot see.  Often when we think about disability – we think about folks who may use assistive devices like wheelchairs or hearing aids. Maybe a ramp or an automatic door comes to mind. But that’s only part of the story of the protections offered by the Americans with Disabilities Act (ADA). The ADA also protects those who are experiencing a host of things that other folks cannot see that may still impact them – at work, interacting with others, at home - things like asthma or depression or auto-immune diseases or hearing voices and so many more. 

I’m one of those people. Many years ago I was diagnosed with the Miller Fischer variant of Guillian-Barré syndrome and I have permanent peripheral nerve damage as a result. I’m lucky to be here … I’m grateful beyond words … and … I still have to navigate the reality of my nervous system every day. I fall quite a bit. I can forget to eat or drink water because my body doesn’t register hunger or thirst very well. My eyes won’t sync up when I’m tired or stressed or getting sick. My hands and feet get numb. My balance is sketchy at best on uneven surfaces (working on that one with a Bosu ball). I also have a diagnosis of CPTSD (Complex Post-Traumatic Stress Disorder) that I manage. Again, I’m lucky … I’m truly grateful … and … takes a lot to navigate that one! Woof. My poor little nervous system is pretty shredded. 

Very rarely do I actually disclose those issues to folks - particularly at work. Since I work in the field of mental health and trauma I will allude to CPTSD by saying things like “I have a trauma background” or “I have lived experience.” No one ever asks me to get more specific. Which is probably not a bad thing since we would be there for a while. 

The truth is – reflexively – intuitively - I know that stigma exists and I feel it especially professionally. Ironic right? That I can work in a field trying to fight stigma but I still feel it every day? I have worried … will I be taken seriously? Will people still view me as competent?  Will I be overlooked for an opportunity? Can they tell I’m struggling to see right now? Do they know I’m having a panic attack? I’m the Director - what will they think of me if I tell them I need help? What would they do if they saw me at my worst? Who can I trust here? Do I feel safe enough with someone to tell them I can’t do that task right now because I can’t feel my hands?

Most of the time what actually happens? Well, the truth is I just silently adjust myself. I’m guessing if you have an unseen diagnosis many of you adjust yourselves too. I try and keep up – I figure it out – I manage. I find a way to do all of the things I need to do while living within my reality.  I don’t ask from others – I revert to asking more of myself. Sometimes I pretend I’m okay when I’m not. Usually, I’m masking something so I guess there’s also a bit of deflection going on most of the time. Humor is one of my go-to’s – you may have your own. When I feel well, I work like crazy to try and build a “buffer” for the days ahead that will be harder. And I still show up – even when I’m struggling. Very, very few people will ever see the toll that “keeping up” takes. It can be exhausting. But that old hyper-independence and appeasement of CPTSD kicks in and I just keep going.  

I’m telling you this for a three reasons. First, if you ever have any questions about unseen disability and the ADA – head over to the Pacific ADA Center and ask them! The ADA covers workplace accommodations for folks with visible and unseen disability. Things like accessing treatment during the work day or needing more time for a task. If you are experiencing disability – you can ask them questions about your rights. If you run an organization, you can ask them about how to make sure you are creating accessible pathways for folks to engage with you. They are a tremendous resource. Don’t be shy. Ask!

And the second reason I’m telling you this – if you are also managing an unseen reality I want you to know you aren’t alone. Simple as that. You are important and valuable and you have so many gifts to offer. Thank you for being here. We need you.

And finally – in celebration of Disability Pride Month – let’s just try and be kinder to one another. The thing about an unseen disability is that we just don’t know what another person may be managing. So let’s build trust and credibility with people so folks feel safe enough to talk to us about their internal realities. Let’s see what we can do about fighting that stigma (we’ll be happy to see that one go!). And let’s start with compassion. It sounds simple – but for someone living with unseen disability – being truly seen means the world.