Optimistic Discontent and my ADA story
“Hope is optimistic discontent. Every act of leadership is an act of optimism. Pessimists can’t lead. Any form of contentment that induces slumber degrades you. Be content with your present and discontent with your future.”
Source: https://leadershipfreak.blog/2015/10/09/optimistic-discontent/
Good afternoon everybody. My name is Bryan Dooley, and I am a self-advocate in the Winston-Salem area. I am honored to be active in the disability rights movement through the North Carolina Council on Developmental Disabilities, Disability Rights North Carolina, and many other organizations. Staff at the Council have invited me to share my reflections on the Americans with Disabilities Act (ADA) of 1990 to commemorate the 30th anniversary of its passage. Through my work on the many boards I have had the honor of learning from many extraordinary leaders in North Carolina. When I initially planned this essay, I was going to have only positive thoughts like many people will since we are celebrating the landmark bill. I don’t want to underplay the importance of the ADA at all; it has genuinely transformed life in many ways. Since I’m under 30, I am considered a member of the ADA generation, meaning I am a person with disabilities who has no experience of life without the protections the ADA guarantees.
When President George HW Bush signed the ADA in front of one of the most significant signing ceremonies in U.S. history, he famously said that the shameful wall of exclusion finally came tumbling down. If we are honest with ourselves, I don’t think anyone can say that the ADA has fully accomplished this mission. Chris Egan the former Council Executive Director, taught me a concept that I believe accurately fits the situation. Optimistic discontent. As I wrote at the beginning of this essay, Optimistic Discontent is very similar to hope. It is a belief that we can always make ourselves better as leaders, and therefore we can make any situation we find ourselves in better. This applies to just about every measurement the ADA is associated with.
One goal of the ADA is Economic Self-Sufficiency. People with disabilities are supposed to have equal opportunities to join the workforce based on their talents and skills, just like every other American. We have made great strides in this area. North Carolina is now an Employment First state after years of advocacy. The Office of Disability Employment Policy describes Employment First as “a framework for systems change that is centered on the premise that all citizens, including individuals with significant disabilities, are capable of full participation in integrated employment and community life.” However, the unemployment rate among people with disabilities has been stubbornly high for many years and remains so. I, winner of many academic scholarships, though a Summa Cum Laude graduate of Guilford College, remain vastly underemployed despite my years of work trying to make this society better for people like me. I don’t seem to be able to get programs like Vocational Rehabilitation to function the way they are designed to work in my case.
Independent living is another goal of the ADA. Fortunately, I currently have the resources I need right now. My support system starts with my mom, who went to nursing school so she could take care of me better. The next tier of my support system extends throughout my large Irish Catholic family. When that’s not enough, I’m lucky I have support from a variety of state programs. I have the best paid support. Unlike most individuals with disabilities, mine have been helping me for years and years. My mom wound up marrying one of them, and I still have my original staff member from when I was about seven years old. Unfortunately, many people in the state are not as lucky.
According to the NC Waiver Action Team, “Each of the 100 counties in North Carolina has a “wait-list,” managed by their MCO. The list is as small as 15 in Graham and Warren Counties and as large as 2336 in Wake County. There are several counties with no wait-list at all. For most counties, the list is
fluid, changing each year. Other counties are in holding patterns as the state service formula is applied to achieve equity across the state. Forsyth County, for instance, has not enrolled a new registrant in four years because other counties in the Cardinal catchment area are considered underserved.” NC legislators could solve this problem, but despite the work of champions for the cause, we haven’t made a significant investment in waiver slots. Instead, we offer small investments that are drops in the bucket compared to the need for services. North Carolina’s average wait is 9.5 years. Thousands have been waiting for longer than ten years.
In addition to personal care services, the ADA has mandated making public accommodations like movie theaters and restaurants accessible. This has been the most successful part of the ADA because it doesn’t just benefit people with disabilities. I’ve often seen people with rolling suitcases and baby strollers using the same curb cutout that I do. I’m proud to be a part of the NC ADA Network. We have been given the training to teach about the ADA across the state.
This section of the law needs protection, but unfortunately, it’s been under attack recently. A bill, called H.R.620 – ADA Education and Reform Act of 2017, passed from the US House of Representatives, and it would have made it a lot harder for people with disabilities to make their environment more accessible for all people. This is because it would have added a lot more steps for people with disabilities to go through before any changes in accessibility could be forced Thankfully, the bill didn’t pass, but the idea is still out there.
As I’ve said, the ADA has made an enormous difference. But we have a long way to go to accomplish our mission that we started three decades ago fully. I think the most significant adjustment that we still need to make as a society is our attitude. We need to expect more from people with disabilities to go to bat for themselves. One way to bring about the change is to study the history of the disability community. I went to college and spent most of my academic career doing that. Disability history is full of darkness and light, but it does combat stereotypes. I think everyone should know at least a slice of what I’m going through. My predecessors fought a lot to make the community better, and now it’s our turn to take over.
That’s how I roll.