Op Ed

What Does Disability Led Leadership Really Mean?

Risa Jaz-Rifkind
May 18, 2022

What does disability led leadership really mean?

Risa Jaz Rifkind

As a brown disabled woman existing in this world, I am constantly judged; and it most often shows up as being silenced or dismissed when I make those less marginalized uncomfortable. Being a dwarf in this world somehow provides an unspoken permission to pass up my intellect as either being praiseworthy or "cute" , depending on what’s more convenient. Though this is a daily occurrence that mostly shows up in microaggressions, some of the more traumatic moments have happened at work. Everything from being ignored at meetings, to eye contact only made with my colleagues even when questions were directed at me, to assumptions that I must be an intern since I wouldn’t be capable of holding my position otherwise. I vividly remember a few years ago, my boss at the time and I went to a meeting. We arrived, both dressed in formal work attire, both said hello, and the person who greeted us, only acknowledged my boss, shook her hand, offered her water, and walked away before I could even respond. My presence made this person so uncomfortable; she completely ignored me.  

The unchecked ableism in our society makes it so that some prosper and some people who sit at the intersections of identities, like me, have a nearly impossible path toward any kind of power and prosperity. Why? Because the systems are built by the people who benefit from them. But it's time for that to end.

At Disability Lead, I am so passionate about our vision of people with disabilities leading with power and influence because I dream of living in a world where I don't have to fight every damn day of my life. I want to be able to speak my truth and never be questioned for it. I want to make it inconvenient for those who have benefitted from the status quo to do anything other than be a good ally.

This is also why I'm running for Development Director of Little People of America (LPA). LPA is dedicated to improving the quality of life for people with dwarfism throughout their lives while celebrating with great pride Little People’s contribution to social diversity. LPA strives to bring solutions and global awareness to the prominent issues affecting individuals of short stature and their families. I believe Little People need to lead this LPA because who else not only understands our lives but can share our culture and our dwarf pride. As Development Director, I will work to create strategies that provide funding for new and existing programs that cultivate a sense of belonging and pride for current and future generations. In direct opposition to LPA's core purpose, existing fundraising strategies allowed pharmaceutical companies that have since released a drug aiming to eradicate dwarfism, starting with achondroplasia, into our space. As Development Director and in cooperation with the Fundraising Committee, I will implement policies and practices that seek to grow our financial resources in a way that doesn’t jeopardize our community.

My parents joined LPA as soon as I was born. I have spent over three decades in LPA, but never really felt at home and comfortable. And it wasn't until the last few years I was able to articulate those feelings and realize it was because, as one of the few LPs of color, I felt marginalized. AND because LPA's leadership so often is held by average height members.

My parents are average height, my brother, my husband - every single person in my family is average height. And every single one of them supports my belief that LPA needs to be run by LPs. I have co-authored a bylaw proposal for there to be a board of only LPs. This proposal has ignited widespread debate in LPA. It's the most passion I've seen from members in years, and that's great. But there's a huge oversimplification of this proposal as an exclusionary practice. Here's why it's not -

Our entire world is built for average height people. Nondisabled people. And yes, white people. I want LPs to be able to claim LPA as our space. We need to lead our space unapologetically. We need not to have to prove our worth and value, and intellect in the rare moments we are in LPA. Because the second we're out of the comfort of those LPA "walls, " the world's reality is all around us.

A lot of the opposition feels like their contributions, or the contributions of their average height family members are not recognized. I acknowledge their work and thank them. And ask them to join me in calling for a new form of leadership, one that values the experiences and perspectives of disabled people. Of Little People.

And if you're still questioning the validity of these claims, I ask you to reflect on your identities, privileges, and role in creating and upholding a world that is exclusionary to disabled people every day. Are you offended because you feel guilty or because you feel personally attacked? Perhaps it's time to adjust your framing and join me in calling for all spaces to include our leadership because we are everywhere.

Op Ed