When I first started my job at UC Berkeley, coordinating a program in conjunction with the state of California specifically for the employment of students with disabilities, I was a greenhorn with disability.
Disabled myself, sure, and that’s why I was hired: I had a Master’s degree and over 10 years experience in Human Resource Development and Training, but almost no experience with disability other than I myself have a disability.
They figured that it would be easier for me to pick up the disability-culture and disability-community pieces than it would be to hire someone who didn’t have the HR experience and training but was tight with disability. So! I got the job!
Early in, I organized a recruiting event with a grassroots campaign organization.
This was in Berkeley, remember, which is a sort of a Mecca for the disabled, given that it’s the home of the disability rights movement. I had told the organization that I coordinated a program that connected employers and students representing diverse populations.
I think she thought that when I said, “diversity,” I meant race; but I hadn’t. I meant disability. Disability, is after all, a component of diversity.
Anyway. I got together a room full of interested students with disabilities – many of them with pretty obvious disabilities. A packed room. All there, eager to meet a recruiter, eager to work, eager to show their stuff.
The recruiter arrived. A young, slim, pretty woman with brown hair and pale skin.
She greeted me with a smile, asked where the students were, she just “couldn’t wait” to meet them!
I opened the door to the room the students were in, she went in, took a few steps in looked at everyone in the room, spun on her heel and walked out.
I followed her out, quizzical. Why’d she turn tail and leave?
She turned to me and said, “I think there must be some mistake. We don’t hire these people.”
This is where I want to say I said something clever and quick but that would be a lie. I didn’t.
I stood there, my jaw was open, I was in shock. I didn’t say or do anything. I just walked her to the door outside and said goodbye and had to walk back into the room full of waiting students and make up some bullshit something. I have no memory of what I said to them to explain her leaving. None at all.
But that moment scorched my mind and fueled my fire.
I no longer see it as a moment full of shame – shame that I didn’t do or say the right thing. Shame that I didn’t speak up or act or flex my muscles or STAND UP.
I see it as a moment that I needed; a moment that shook my soul up and committed myself – possibly for life – to advocacy, to learning to stand up.
Sometimes that’s what it takes: a moment that is simply unforgiveable. Unforgettable. A moment that clicks with your soul, a moment that sets a new definition within yourself as to WHO you want to be, WHAT you want to stand up for.
These moments… I think they are gifts – from the universe to ourselves. Gifts of priceless bounty because they have us walking on the edge of a blade, deciding whether or not we want to temper ourselves.
Will we stand up?
Do we speak a truth that will not be popular but which we know rings clearly within our moral compass?
Because it’s not easy being the one that will stand up or speak out – people mostly only like the ones who stand up and speak out after they are dead. Then they become famous and have streets named after them but when they are alive? They are just as unpopular as it can get; the person sitting alone in the Cafeteria.
This gift of a moment doesn’t extend only to ourselves who have disabilities; it’s for all allies, most particularly for parents of people with disabilities. I want to be specific here because when many parents without disabilities enter the world of disability by dint of their child with a disability, it’s all completely new to them. Not only is there a new language to speak (sometimes literally, with ASL, but always with the Language of Bureaucracy), but they are also dealing with things that many parents have never dealt with before.
They are dealing with prejudice. Stereotypes. They are dealing with discrimination
They are dealing with their own memories related to disability: how they treated people with disabilities and how they saw people with disabilities being treated. They come face to face with their own ableism. Any and all ugly thoughts or feelings related to disability come up, wrenching and painful as their own beloved child is now in this group, this segment, exposed and vulnerable to the prejudice and discrimination that often accompany disability.
I did it too: when I found that I was pregnant with a child with Down syndrome, I applied the little I knew about Down syndrome, and the lot I knew about abuse and disability to my projection of what my daughter’s experience in this life would be. While I never went the “special needs” route, meaning trying to re-label disability to make it less “disabled” sounding, I am quite sure I tried to present my daughter in the most able-bodied, non-disabled, cognitively-typical way possible.
All of these steps are steps along the path in the journey towards true acceptance.
We go from that step of recognition of what this means, what it’s about, to that next step of belching out all that we have internalized.
The gift of the moment for the non-disabled parent of a child with a disability is that moment when you choose to listen to the disability community, when you choose to transform yourself rather than your child. When you choose to see the problem as systemic and cultural, rather than with the person with the disability.
It’s when you choose to see disability as something that is an intrinsic part of the human condition, and you make that choice to teach your child that their needs are not “special,” they are “human,” and that your child has value. Not value because they have “overcome,” disability or value because they have learned to fit themselves into a mainstream “norm,” but value, because they exist, full stop.
They don’t need to prove anything to anyone.
The Gift of the Moment Take Courage
All of this takes moxie. It’s not easy to lean in when the gift of that moment presents itself and say or do something that goes against our systemic or cultural grain. It’s not easy to speak a truth that will not be popular but which we know rings clearly within our moral compass.
And it’s not easy being the one that will stand up, speak out, harder still to be the one who realizes that the change needs to happen internally first.
I’ve been in this for a while now – both as a person with disabilities and as a mother, of children with disabilities. One thing that truly gives me hope is seeing the gradual transformation of so many of my friends and also of non-disabled parents of kids with disabilities. I deeply admire these painful, difficult, transformative shifts in consciousness, advocacy and expression, I know firsthand how hard it can be.
I also know firsthand that the fruits of the transformation – connection, sense of worth, development of courage, fearlessness and more – are worth it.
Opinion PiecesPosts that I've written about disability access, inclusion or things said
Meriah Nichols is a career counselor. Solo mom to 3 (one with Down syndrome, one gifted 2E). Deaf, with C-PTSD and TBI, she’s also a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.