This is what National Disability Awareness Month is really about – the truth that many don’t (want to) know… It is not about success, it is about how we strive to thrive.
October, 7 2026
By Morrison
It is with a heavy heart that I write this reflection.My heart has been hurting for some time now, but reading Jennifer Hess‘s Facebook post about being laid off from the well-known Seattle Lighthouse for the Blind brought many of those feelings to the surface once more. What she shared was both alarming and unsettling. Why? Because it confirmed a fear that many DeafBlind people quietly carry with us every day… we are often among the first to be overlooked, excluded, deprioritized, or let go.
I had the opportunity to meet Hess once or twice during visits to the DeafBlind retreat in Seabeck. My impression of Hess was that they embodied the kind of warmth, authenticity, and leadership our community needs. Reading their words was difficult, but they resonated deeply with me as a fellow DeafBlind person who also serves in a leadership role. What made it even harder was that, around the same time, I read posts by Dr. V describing ongoing struggles with transportation accessibility. Their experiences felt painfully familiar.
As DeafBlind people, many of us spend enormous amounts of time and energy navigating systems that were never designed with an understanding of us and our distinct needs. Many who are not DeafBlind don’t understand that something as basic as getting to work can become a daily battle. Transportation systems such as “Paratransit” that repeatedly call instead of text. Employers who fail to understand access needs. Organizations that speak about inclusion while creating environments where DeafBlind professionals struggle to survive.
Dr. V described what they call the “DeafBlind Tax” and that concept struck me deeply. I actually first came across this term from another profession who confirmed that this is a thing. The DeafBlind Tax is not just financial related burdens; it is the time spent arranging transportation and accommodations. DeafBlind Tax is the emotional toll of constantly advocating for ourselves, educating others so they can better understand where we stand. This is the mental energy required to anticipate barriers before they occur, and due to that – it triggers the physical exhaustion of navigating inaccessible environments. As a result, this is the social cost of missed opportunities and relationships. And it is the professional cost of having to work twice as hard merely to access the same opportunities others take for granted. So many don’t realize that it takes us not twice as long, but four times as long (or even more) to do things, get to places…
Reading both Jennifer’s and Dr. V’s posts validated something I have been carrying for a long time. I am not alone. (Those who are DeafBlind reading this, you are not alone either). Yet there is also sadness in that realization. We continue to experience oppression, exclusion, and a lack of understanding not only from broader society but sometimes from within communities that should know and do better. I have experienced this firsthand.
In one professional role, I was transferred onto a team led by a Deaf supervisor and surrounded by colleagues who shared similar family and cultural backgrounds. As a DeafBlind, queer, nonbinary individual, I immediately stood out as different. When concerns arose regarding professionalism and workplace culture, my experiences were not believed. Instead, I became an easy target. What was especially painful was that this was not an isolated experience. The supervisor before that (within a different professional role and workplace), also Deaf, was similarly hostile toward me despite my positive contributions and commitment to the team and work. Both supervisors from different workplaces knew me only briefly before deciding they wanted me gone. That reality is frightening.
For much of my life, I was unable to fully be myself. I learned to minimize parts of my identity simply to survive. When I finally found the courage to show up authentically, to contribute passionately, and to bring my full self into my work, I was met with push backs, judgment, misunderstanding, and exclusion. As a DeafBlind, queer, nonbinary person, reading Jennifer’s post was painful because it reflected a truth many of us fear: We are often the first to go. That is a difficult reality to digest, it is depressing, it is exhausting, and yet it is real. So real.
This is not a reflection filled with butterflies, optimism, or easy inspiration.
It is about truth. Especially given this month is “National Disability Employment Awareness Month…” A month of sharing “success” stories when they exclude these very truth that many of us endure. It is about the reality many DeafBlind people live every day. And many cannot seem to care about our realities to stand behind us.
As I write this, my heart aches. I find myself asking, When will the injustice end? When will equity stop being something we have to fight for every single day? When will DeafBlind lives be valued not as exceptions, but as equal?
For me, that pain has led to a simple conclusion, Enough is enough. Enough of being targeted, overlooked, bullied, disrespected, deprioritized. Enough of systems that place barriers in front of us and then expect us to overcome them alone. I am calling on my DeafBlind colleagues, friends, and those I have not yet met… I know many of us are tired, advocacy can feel exhausting. I know the thought of writing one more letter to a supervisor, Human Resource, senator, mayor, legislator, or local representative can feel overwhelming, daunting. Believe me, I know, and I understand. But we need each other now more than ever. We need to find ways to come together and collectively challenge the injustices we continue to face.
And we need allies… Not allies who take over. Not allies who speak for us, but allies who stand beside us, support us, amplify our voices, and help clear pathways so DeafBlind leaders can lead.
People like Marc Safman have devoted tremendous energy to advancing DeafBlind rights and visibility. We need more people willing to stand alongside that work, contact their legislators, engage their local communities, and support policies that center DeafBlind access and inclusion.
I still remember standing at the State House in Boston last spring when I invited the broader community to stand with us. I had hoped people would help DeafBlind individuals get there, and others would join us in solidarity. Instead, I stood there alone with my CN and it was heartbreaking.
Perhaps this reflection is not easy to read, but it reflects a truth that many DeafBlind people know close within their hearts – we are still fighting to be heard, seen, and felt. Yet, we are still waiting for a society that recognizes our struggles, our humanity, our contributions, our leadership, and our right to participate equitably and fully.
My tears today are not only tears of pain and worry… They are also tears of determination because despite the exhaustion, despite the setbacks, and despite the fear, I refuse to give up on the hope that one day DeafBlind people will no longer have to fight this hard simply to belong.
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