A Strategic Life

As a person with disability, and a long-time direct service provider to workers with disabilities, I came to realize long ago that disability rights are key for the advancement of the civil rights movement today. The older I get, the more I realize that making a positive impact for the future in improving the lives of people is the primary contribution a human being can make during their short stay on earth. Because people with disabilities, on average, experience the highest degree of discrimination and economic hardship, I can see no better investment of my life, my talents, my energies, and the passion of my soul than to be a disability advocate. It is from this perspective that I want to share with you today.

We live in an era of strategic opportunity for Washingtonians with disabilities. It is an exciting time to be a disability advocate and to know that what you do will have long-lasting positive impacts on people’s lives. There is no other opportunity that illustrates this more than the proposed, “Nothing About Us Without Us,” legislation before this session of the Washington State Legislature. This legislation addressed the need to have people with lived disability experience at the table when policies and legislation directly impacting people with disabilities are being discussed.

For far too long, well-intended people who create legislation and state policies, related to people with disabilities, have made decisions for Washingtonians with disabilities without asking or hearing from the people with daily lived experience about how such changes would impact their lives. As a culture, it is time that we move away from the “we know what’s best for those people,” attitude and to grasp the key principle that “those people” are the people who know what they need and, equally importantly, what they do not need.

“Nothing About Us Without Us,” if passed by the legislature and signed into law by Governor Inslee, will require that any advisory group making recommendations to the legislature on legislation or policy directly related to people with disabilities will include people with such lived disability. Although this might seem like an obvious need and the best system for making informed decisions, it will be a significant change compared to how the state has made such legislation and policy decisions in the past. I, personally, fully support this legislation. “Nothing About Us Without Us” is likely to be combined with a legislative proposal to provide stipend support to help those appointed as disability representatives on these advisory groups, and who are not paid to be involved, to have the financial assistance to allow them to fully participate. 

Your voice matters now, more than ever, in sharing your position, and your beliefs about this proposal with the legislators in your district. They represent you, as a voter, and want to hear from you about “Nothing About Us Without Us.” You are their best chance to be informed about the need for such a change to be implemented into law. In order for our representative form of government to work effectively, we voters need to do more than just vote for people that we believe will represent our views and values. Our elected representatives need to hear from us on needs for legislative action and pending legislation. Each of us has a unique perspective and unique experiences that inform our values and our views. It is vital for our legislators to hear from all of us, not just from a few “loud” voices. A democratic republic works best when all speak up. That empowers elected representatives in government to act on behalf of the people they represent.

I celebrate and embrace the Grand innovation of a truly representative government of the people and by the people, which is our nation. Our understanding and application of this revolutionary principle have grown from generation to generation, to make certain that “The People” truly includes all people, especially the most vulnerable and disadvantaged citizens of our land. The time has come to take a step forward toward this noble goal, by bringing the voices of those with lived disability experience to the table when legislation and policy changes that will directly impact their lives are being developed. This will also be a big step forward away from the paternalistic tendency of our culture to want to make decisions for “those people” with disabilities on their behalf without actually consulting with those people about what they need or what will work for them. People with disabilities are people first and their voices are not only valid when speaking to issues that impact them, but arguably, the most informed voices on such topics.

As a Washingtonian with disabilities and as a service provider with over 12 year’s of direct service provision to people with disabilities in six counties of Washington State, I have, time and time again, seen the failures of decisions made for people with disabilities without the voices of people with disabilities. As a certified Human Centered Design Instructor and practitioner, I can assure you that the best decisions, processes, services and plans result from including the voices of those most impacted and closest to the results of such decisions, present at the design table. Those are truly the most important voices, the true subject matter experts on these issues. As those with the lowest average income and standard of living the lowest rate of employment, and often with the greatest barriers to communicating their wants, needs and concerns, people with disabilities are at the cutting edge of the advancement of civil rights in the great state of Washington.

Other legislative proposals are now in the works that would have significant impacts on the lives of Washingtonians with disabilities. Your voice is needed at the table now, as this legislative session is quite short. The legislature is scheduled to convene on January 10, 2022 and adjourn on March 10, 2022. There are other legislative initiatives of interest to Washingtonians disabilities this legislative session, including proposed amendments to the Death with Dignity Act, training and funding proposals to address the crisis shortage of personal care providers and employment providers, House Bill 1649 related to an advisory committee of people with disabilities for issues related to hunting and fishing regulations and many other proposals.

Efforts are underway to shift the state’s focus from institutionalization-based housing to community-based housing resources and supports and from involuntary inpatient treatment to increasing support of effective outpatient programs. An emphasis on increasing safety in the interaction of law enforcement with people with disabilities continues. The disability-advocacy community in Washington is strongly advocating for remote attendance and remote testimony for legislative committees to be made a permanent feature to increase equity in representative government. So many strategic bills and proposals are on the table for this legislative session. Be informed and be impactful in 2022!