“The “deeply diverse” Board of Directors can practice independent thinking, bring the differentiated points of view, ideas, and capabilities to the table, and fulfill the board duty more effectively.”
― Pearl Zhu, Digital It: 100 Q&A’s
The Americans with Disabilities Act (ADA), the Individuals with Disabilities Education Act (IDEA), the Developmental Disabilities Act (DD Act), and the Olmstead Act are all examples of the most significant disability rights legislation passed in the last 60 years. They begin with the phrase, “Disability is a natural part of the human experience.” Those of us who have been disabled for a good part of our lives, understand that statement completely. But what will it take for everyone else to figure it out?
A few months ago, I started a series called ‘Ask Kathy’ where I respond to the questions that people write in. Riley asked me to explain what is meant by the statement “Nothing about us, without us”. Here is part of my response.
“Nothing about us, without us” expresses the belief that people with disabilities have a right to participate to the fullest extent possible in their own lives. We must also be directly involved in the development of programs, services, and laws that are meant to support us. If we allow others to make decisions for us, then we have given away our power. We deserve a seat at the table when our lives are directly affected by the laws being proposed.
People who have disabilities should take an active role in the management of organizations with a disability client base. While I believe that most people with disabilities are more than qualified to express their needs and wants about the services they receive, a disability alone is not enough to lead an organization. Not everyone identifies as having a disability. A board member needs to be able to think beyond their situation and in a cross-disability way, e.g., if I am thinking about accessibility, I need to think about more than accessible parking and ramps. I may need to think about sign language interpretation or plain language documents. This would allow board members to advocate more effectively for the people they are representing. Most importantly, they should never be afraid to speak up and tell it like it is. Board members should also be able to share their relevant lived experiences when necessary.
In general, most disability service organizations operate with councils or boards that are mandated to have at least 51% of their voting members represented by the disabled community. An exception to this rule would be the state Councils on Developmental Disabilities, which must have 60% to follow the DD Act. Individuals with disabilities and family members can fill this requirement. They are nominated to participate on boards, committees, or councils all the time. I believe I’ve served on many of them, including the NH Council on Developmental Disabilities, and the NH Disability Rights Center. Currently, I am serving my second term on the Medical Care Advisory Committee.
We have talents, expertise, interests, and concerns about other things that may be unrelated to disability. It is important to remember that disability issues and community issues are one and the same. Everyone has concerns about children getting a great education, safe places to walk and play, our neighbors having access to the food they need, as well as emergency preparedness. As community members we want our streets to be free from crime and to be able to cast our votes because our voices matter. These are universal issues for everyone, but people with disabilities usually need to think one step further about access.
Lastly, it is much less common for people with disabilities to be nominated to serve on community boards or committees that are not specifically related to disability. I served on the Stratford County Public Health Advisory Committee. I was asked to join because of my knowledge of lead poisoning. It was also very helpful that I could talk about disability issues in a universal way. Diversity is very important because it helps ensure that the needs of the entire community are met.
From where I sit
After graduating from college with my degree in elementary education, I was looking for any relevant experience to build my resume that would lead to employment in the school system. I joined the board at One Sky Community Services, an agency that supported people with developmental disabilities and their families. I needed to understand how the whole system worked because I wanted to be able to advocate for others. I also volunteered at a local elementary school right near my house. Volunteering worked very well for me. I was making connections in my new community. I was employed at the elementary school three months later. Whether we are employed or volunteering, it doesn't matter. We should be seen as people who can give to our communities. In our fight for inclusion, we can’t complain if we aren’t willing to participate and get involved.
I think the public understands that disability never discriminates. It can change anyone’s life in an instant and that is what makes it so scary. I have to believe that my presence in the community makes it less frightening.
Disability is not seen in the same way as other types of diversity or protected classes under non-discrimination laws such as race, religion, gender identification, sexual orientation, age, national origin, or citizenship.
When disability is understood to be a natural part of the human experience, we will have a seat at the table.