When funders focus on developing “youth leadership” they are nearly always assuming a nondisabled model. By that I mean they assume that most of the applicants will have access to the curriculum (even if it’s lousy) and can participate in whatever afterschool programs are offered (even if there’s a limited list).
But most disabled folks in the 18-24 year old focus of nearly all youth funding are either people who went through school as disabled or they are newly disabled people. People with disabilities become disabled at all ages. When we do, there is usually a multi-year period of adjustment. I jokingly call this our “rookie” phase. Like all rookies we need to learn how to function as a person with disability. Numerous new life skills are needed to be successful.
Students who go through school with disabilities rarely have the same opportunities as nondisabled students. Sometimes it’s an Autistic student who’s told they can either have their IEP-mandated accommodations OR take the Advanced Placement class. Other times it’s the fact that the school-provided transportation doesn’t allow disabled students to attend afterschool programs. For whatever reasons, disabled students lack of opportunities means they are not learning important group leadership skills.
Funders also assume that youth can learn important pre-leadership skills such as organizing an activity or leading a project through community-based opportunities such as religious youth programs, community organized groups such as the Scouts programs, and through youth activity programs such as dance and sports programs. Each of these opportunities is rarely available for the majority of youth with disabilities.
When there are youth programs available to disabled students, they are nearly always “special” programs and nearly all depend on nondisabled people as leaders, often nondisabled youth. So disabled youth rarely learn the important pre-leadership skills even in these environments.
About once a decade I discover a program that actually provides pre-leadership and leadership opportunities for youth with disabilities, such as the Empowering Fe-Fe’s or Kids As Self Advocates (KASA). Yes, once a decade. Often these programs are separate from any nondisabled youth programs so their funding is soft money, usually short term grants.
The notable exception to this is disability communities where the leadership is disabled such as National Federation of the Blind, Little People of America, and the National Association of the Deaf. But these opportunities depend on the usually nondisabled parents appreciating the need for their disabled child to know disabled adults. Unfortunately few parents take advantage of these great resources.
So nearly all disabled youth are effectively barred from participating in youth activities that are available to nondisabled youth.
That means that they have to learn those important pre-leadership skills at a much later age. One program got the funders to extend the “youth” age limit to 40 years old. But this is a rare exception. Nearly all funding for “youth” has an upper limit of 25 (sometimes 30) years old. In other words, the funders assume that they are taking youth from their existing pre-leadership opportunities and offering them leadership opportunities.
They assume that youth can travel independently – whether it’s across town, on the public transit or even across the country; that youth have pre-leadership skills; that youth have cross-cultural experiences and familiarity. In short, that youth have “college-ready skills.”
The few programs that serve disabled high school students (and even college students) often find that this is the first time a disabled youth has attended ANY event without a family member for support; that the disabled youth has never participated in any group where they had repeated opportunities to develop pre-leadership skills; and that the disabled youth often has large and significant barriers to travel and attending an event without a family member, such as having no experience managing money or arranging for needed support. For many disabled people the opportunities to learn pre-leadership skills don’t even start until they are at least 18 years old.
So when the funders only want to focus on “youth,” disabled people are at a significant disadvantage. Many times nonprofit programs have told me that youth programs are a priority for funders and that finding money for non-youth-focused programs is really difficult. The idea that funding youth leadership creates a leadership pipeline for a community does not work in most disability communities.
Focusing on only funding “youth” programs puts disabled people at a significant disadvantage. We need strong leaders but the current funding model makes it nearly impossible to develop the needed skills and resources to make that happen.
Four Ideas for Developing A Strong Leadership Pipeline:
- Whenever possible, provide opportunities for disabled youth to work on projects. Intentionally create a role for them where they can learn the skills for the project and test out how to shift their existing disability-related strategies into a work situation.
- Provide disabled youth with a disabled mentor for the project. This could be another youth or a disabled adult. They need to see a disabled person in a leadership role, see how they coordinate their disability with the job, and have an opportunity to ask questions.
- Offer disabled people of all ages the opportunity to learn leadership skills. Managing disability in a job context is tricky and there is very little written information about how to do it well. Providing opportunities for disabled people who are new to being a leader is important at all ages.
- Far too often disabled people of all ages are told that they need a nondisabled person nearby. Provide opportunities for disabled people to work together. Creative thinking and building confidence often ensues.
Corbett Joan OToole is a disability historian, fiber artist, and author of Fading Scars: My Queer Disability History, a finalist for the 2016 Lambda Literary Awards.
Her current work focuses on documenting disability history, particularly around violence, and offering networks between diverse disability communities.
Meriah Nichols is a counselor. Solo mom to 3 (one with Down syndrome, one on the spectrum). Deaf, and neurodiverse herself, she’s a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.