September 26, 2026
By Morrison
*Trigger Warning* – mental health: depression
As I struggle with my day-to-day life as a DeafBlind person, with work, dealing with ignorant people left and right, constantly being asked why I need this or that as a DeafBlind person, constantly explaining myself so others will understand, I find myself spiraling inward where darkness lures me in. Within the darkness, death lingers. Then comes a realization that a part of me is indeed dying: my eyesight.
Since I was diagnosed, I didn’t realize the impact of this realization until this point in my life, that my eyes are dying, a part of me is dying. As a deaf person who struggled for so long with this identity due to being in a hearing family and wanting so much to belong and be a part of the family conversations, I struggled. I think I can “hear” them talking, but I don’t understand what they’re saying. Tapping on my mom’s arm at dinner, “Mom, what are you talking about?” Mom tells me bits and pieces of the dinner conversation. I eat my food and leave the table.
I struggled in my own family with the fact that I was the only deaf person. I often felt left out. Even when I was among deaf peers at college, I was left out. I never felt as if I belonged. But I found a few people who mutually understood this feeling, and so we formed our own “crowd” of misfits. No one really cared to know who we were or what we did.
But it was through them, this small circle of friends, that I found peace within myself and embraced being deaf. I think it’s safe to say that they did too. It was a space where we didn’t judge each other. We just let each other be, talk, sign, and sim-com (signing and talking at the same time).
Graduate school was a blur, literally. I just wanted to get through the program to get a job that I couldn’t get with just a bachelor’s degree. It was then that my roommate, my best friend, told me to get my eyes checked, and said so with concern for me.
So I made the appointment and went. I sat in the lobby, not knowing what to expect and hoping that I didn’t have what others had: Usher syndrome.
After a series of tests and waiting in between, I finally sat in the exam room. The doctor came in and said those two words:
“You have Usher syndrome.”
My response was blank, a state of disbelief. I “heard” the words, the diagnosis, but didn’t take it in.
Then the doctor proceeded to talk and asked, “Do you still have your license?”
I nodded. “Yes.”
The doctor then said, “Okay. I would not recommend you drive at night.”
I took those words in quietly, still in a state of disbelief. A few more words from the doctor, and then I was off.
I sat in my car, looking out the window. Is this real? Am I dreaming?
I drove home and called my mom. I cried when I told her the news. But it was not then that it dawned on me that my eyes were dying. I was crying over the news, but I didn’t truly accept it.
That was about 20 years ago, give or take.
Here I am today with the thought that I don’t have much time left in the sense of being able to truly embrace the world like I once did. I used to love photography. I love art. I love things that are visual, which is natural for many deaf people. Only now, since that day in the doctor’s office, do I realize I don’t have much time left to take in the world like I want to.
Ten years ago, I gave up driving, and that was one of the hardest things I’ve ever done. So many people take driving for granted, a privilege many do not fully appreciate. To get in the car and go wherever you want is a form of freedom.
For me, once I gave up driving, I had to turn to others and ask for rides, wait for them, and have them wait on me. I hated every bit of that feeling. I missed being able to get into my own car alone, listening to music I liked, and just being in solitude as I drove.
Traveling as a DeafBlind person, as my vision slowly dies, is becoming harder and harder.
I am at a crossroads where I am unhappy with my job. I am in a space that is built for sighted folks, people who can see and are not blind. I am also in a space among those who are not deaf. I am among people who do not truly understand, from the heart, what it is like day in and day out to work in that space.
To have to fight to find a way to get to and from work without worry because the employer doesn’t understand the stress and experience of someone who is both deaf and blind, using transportation that is not designed for us. They demand that we DeafBlind folks be in the office, and when a solution is found, they are still not pleased and demand we be there on a certain day.
I lost my job in the past, during the peak of COVID, when a supervisor at The Learning Center for the Deaf demanded that I report to campus, not understanding the barriers and challenges that posed for me. Despite my commitment to show up in other ways, my work, my contributions to the team, and my dedication to the kids, it was not good enough. I was terminated for not being able to make it to campus.
The job after that was with a team that came from deaf families, and I was not from a deaf family, so I was immediately shunned and oppressed for being “different.” My supervisor then wanted to onboard me even though I was already onboarded. They simply wanted to meet with me in person to tell me to my face that they wanted to terminate me, but that I was lucky the boss liked me.
I was told by those close to me to look within myself and ask why I have had such difficult employers and why I fight them.
I fight them because I want so much to work just like everyone else, have a successful career, and contribute. But I can’t always do things in the ways they expect me to. When I ask for accommodations, such as being able to work from home, they are not granted. When I try to justify why I need them, I am told I am a burden.
As we enter Disability Awareness Month, many employers will showcase “success stories” without truly sharing the pain points that led to that success. Or they showcase these stories as tokens, proof that they are meeting the status quo of employing people with disabilities.
So many people with disabilities are struggling, yet remain quiet because they don’t want to lose their jobs. I can absolutely relate to that.
So here I am today, writing this raw blog about my disabilities as a DeafBlind person, wondering:
Is it worth it for me to continue working?
I feel defeated. Tired of fighting to keep a job. Tired of asking for accommodations. Tired of explaining myself and justifying why I need them.
I wish I could simply be respected for who I am and the work I do, not patronized as less than, reminded of my disabilities and challenges, and challenged over things that are beyond my control.
My eyes are dying.
It has gotten worse since the pandemic, to the point where I now have to stand nose-distance from things in the grocery store to read what I am looking at.
I ask my partner, “What am I looking at?”
I have bad days where I miss things, trip over things, bump into things, and hit things.
Standing in the train station a few months ago, unable to make out where my train was or where I needed to go, was devastating.
I was angry.
Part of me wishes I could use what’s left of my eyesight to travel the world, see its beauty, experience different cultures, architecture, artifacts, and art.
But I have to work to do that.
And to work means finding an employer who respects me, treats me as an equal, trusts me to do the job, and allows me to truly contribute.
Disability Awareness Month isn’t about showcasing success stories.
It’s about showcasing the pain points. The truth.
The fact that so many people are still struggling.
It is not about dismissing these truths. It is about raising awareness of what still needs to change in the working world.
My dream job would be to work from home, have a personal CoNavigator and Protactile interpreter to travel with me for meetings, presentations, and workshops.
To help change the system for our DeafBlind community, where services are designed specifically for us and our needs, not split between deaf services and blind services.
Our own services. Our own supports. Designed for us.
Yet my dying vision keeps ticking away. And I feel as if I need to make a choice for myself, one where I can truly live a life without stress, burden, and worry.
If only it were that simple.
Disability Awareness Month is meant to educate employers and educational institutions about our realities and to change how they manage us.
We don’t need to be managed. Our disabilities already manage enough of our daily lives through barriers and lack of access.
We don’t need to be treated with disrespect or seen as less than.
So many of us can do the job, just not the way many employers expect us to. We do things our way for a reason, and that reason should be enough.
If a part of you was dying, how would you use your time? What would you do?
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