By Tomas Vallejo
Recently a spotlight was shined on the lack of accessibility afforded to the disability community in our country, and it must change. About a month ago, Denver city councilman, Chris Hinds, was on his way to a public debate as part of his reelection campaign. However, when he arrived, the venue failed to provide an accessible route for wheelchair users to the stage. Hinds then lifted himself onto the stage and once there, held himself upright on the floor of the stage by holding onto a chair. After some time, despite the humiliating episode, the debate did take place, but in front of the stage where Mr. Hinds could comfortably participate. This event showcases the shameful amount of progress in many of our communities across the country since the passage of the Americans with Disabilities Act more than 30 years ago!
While it is truly shocking that an elected official is facing accessibility obstacles when it comes to fulfilling their political duties, inaccessibility is an obstacle that the disability community is all too familiar with, especially when it comes to participation in our democracy. According to data from the National Disability Rights Network in 2017, 83% of polling stations were at least partially inaccessible to voters with disabilities. Since then, other forms of voting have been popularized such as absentee voting, however, due to restrictive voting measures, in 2020 alone more than 11% of voters with disabilities reported having difficulty casting a ballot for their representative (American Civil Liberties Union). This raises the concern of why inaccessibility remains prevalent given that, according to the Centers for Disease Control and Prevention, 26% of adults in the US have a disability. Such failures harm not only the disability community, but also the heart of the nation as a whole.
It goes without saying that universal accessibility would benefit society as a whole just as much as it would benefit the disability community. First, universal accessibility would only enrich the democratic process by making it easier for the voices of individuals with disabilities to be heard by their elected officials. According to the U.S. Election Assistance Commission and Rutgers University in 2020, disabled Americans were roughly seven percentage points less likely than non-disabled people to vote. Additionally, in the words of Councilman Hinds, many members of the disability community would “rather go straight to the ADA '' instead of being victim-blamed for speaking out against the inaccessibility of a given location. By prioritizing universal accessibility, both public and private sector entities can make a good impression on a customer with a disability and also avoid a possible ADA lawsuit.
Despite the benefits of universal accessibility, the truth is that America has a long way to go. The good news, however, is that much can be done to promote accessibility and inclusion for the disability community. The most important way that this can be done is through political activism. Based on a conversation that VisitAble’s founder, Joe Jamison, recently had with Councilman Hinds the best way to fight for universal accessibility is to “work within the system to affect change.” This cannot be accomplished simply by voting. One can also campaign and contact their local representative to let them know that accessibility is important to them. Allies across the country can also promote universal accessibility by being political advocates and spotlighting essential issues or problematic policies. One of the most popular ways to be an advocate is by spreading views on social media; while this may not be as effective as voting or campaigning, social media is a useful political tool, especially when attempting to reach a vast number of people. While it is easy to write about the importance of promoting accessibility, implementing accessible and inclusive practices is a different beast.
There are simple ways for campaigns and organizations to implement accessible practices. At public venues such as rallies or debates, video boards are common so that all people in a large crowd can see whatever is going on onstage. Closed captioning on screens allows individuals with disabilities to follow along with debates and speeches. This same tool can also be used for political and apolitical websites. Additionally, the use of sign language interpretation could be of extreme benefit to Deaf and hard of hearing voters. Arch20 shares some other ways to make public spaces physically accessible for individuals with disabilities, including the installation of ramps, and braille signs to signal restrooms and exits. Public spaces and organizations can also work towards universal accessibility by investing in training such as VisitAble’s Disability Awareness and Inclusion training, which involves teaching members of an organization how to “respectfully help, interact with, and treat those with disabilities” in a professional setting.
What happened to Councilman Chris Hinds at the debate last month was unacceptable. However, the incident has allowed us as a country to reignite the conversation around the lack of accessibility in our public and political spaces once again. In the words of the councilman himself “it is important for us to have access for everyone, and we should all have the opportunity to survive and thrive in our communities.” Hopefully, this conversation will turn into action, and in another 30 years, we will not look back with regret on how little progress we have made since the passage of the Americans with Disabilities Act.
By Stasia Winslow
“Daniel was a very good baby,” my grandmother, Jane Winslow, told me. “He was much more mellow than your father,” she recalled with a smile.
When Daniel was about two and a half, Ms. Winslow began to notice he wasn’t reaching certain milestones. “He was really not behind verbally at all, but he didn’t seem like he was keeping up with the other two and a half year olds physically – you know, riding a tricycle and those types of things.”
Ms. Winslow soon began to realize that getting any medical advice or diagnosis was going to take a significant amount of advocacy on her part. “By the time he was two and a half, I could see it, but I could not get any doctor or pediatrician or anyone to agree with me.”
She enrolled her son in an infant development program that he attended three days a week, where he received physical and occupational therapy. However, without any medical diagnosis or assistance from her pediatrician, Ms. Winslow knew she had to keep advocating for her son. Finally, after exhausting the resources she had in the town they lived in, Portland, Maine, Ms. Winslow decided to send a letter to the Boston Children's Hospital – the best pediatric hospital in the country.
When they arrived at the hospital, the doctors tested Daniel “with every test you can imagine”. They did a test on his chromosomes, and discovered he had an extra piece on the small arm of chromosome 15. At the time, the eighties, there was only one article written on inverted duplicated chromosome 15 syndrome (Dup15Q syndrome) and there were only about 10 known cases.
After the diagnosis, Ms. Winslow still found it difficult to get all the necessary assistance, given that doctors were not knowledgeable about Daniel’s condition. “You still had to be very much an advocate,” she said, “When we brought him back to Maine or took him to other pediatricians, they didn't know much about it. Nowadays, there's an organization for it and there are thousands of people who have been diagnosed since.”
Beyond the medical establishment, Ms. Winslow found that oftentimes, people who she explained the diagnosis to would immediately jump to the conclusion that Daniel had Down syndrome, since that was the only chromosomal mutation they had heard of. She noticed that people did not understand the nuances and differences between different conditions or disabilities, and many times wouldn’t take the time to try and understand.
Ms. Winslow continued to advocate for Daniel throughout his youth, as she kept him in schools every place they moved up until he was twenty years old. After a few years living and working at home in Hawaii, Ms. Winslow enrolled Daniel in an independent living program in California, where he has lived for the last twenty-five years.
“I would say the main thing for someone like Daniel is that they just really need an advocate. The resources are there, but they don't come to you.”
A few years ago, Ms. Winslow attended a Dup15Q Alliance meeting, where she met young mothers who had children with Dup15Q syndrome. Since the diagnosis was very new back when he was diagnosed, Daniel and a few of his peers are the oldest members of this group which now has thousands of members nationwide.
The younger parents of children with Dup15Q Syndrome still have to advocate for their children like Ms. Winslow did, but now, through the Dup15Q alliance, they have a support system of people in similar circumstances. Even a strong advocate needs a strong support system.
By Stasia Winslow
Michela Alioto was on Bill Clinton’s presidential campaign trail in 1992, working as a scheduler for Clinton’s vice-presidential nominee Al Gore, when she began to take notice of the striking lack of representation people with disabilities received on the national campaign. Alioto uses a wheelchair, and so one of the things she first noticed was that, while many marginalized groups had a representative on the campaign who would advise Clinton on how to appropriately engage with certain issues that pertained to that group, such as someone who would represent Latino constituents, there was no one who represented people with disabilities. She said, “What I realized was that they had about 20 different constituency groups, but they did not have one that represented the disabled community. And so I wrote a memo to George Stephanopoulos who was the campaign manager… and I basically submitted a proposal to start a disability constituency office in the policy department, to which he said ‘Ok, great.’”
Once Alioto established this new office within the campaign, she began to tackle accessibility concerns that hadn’t been taken note of, let alone addressed. She said, “The campaign had no sign language interpreters, no information in Braille or large print, and they didn’t have anything on cassette tape. They only had one telecommunications device for the Deaf and Hard of Hearing communities machine (TDD). If a Deaf person called anyone in the campaign, that person would have to go down to the basement and use the one TDD machine.”
She got to work addressing these issues immediately, saying, “A lot of my job was getting sign language interpreters to every event, and making sure disabled people had places to go when they went to these events in all 50 states”.
In addition to the accessibility side, Alioto had to ensure that the language the campaign was using was not offensive to the disabled community. “I started off doing little stuff like getting the speech department to change phrases that Clinton would use”, she said. “For example, he used the phrase a lot about how FDR ‘broke from the shackles of his wheelchair’. People within the disabled community expressed that, ‘you're not shackled to your wheelchair, your wheelchair is your source of freedom and independence.’”
After the campaign was over, Alioto worked at the White House in roles unrelated to disability legislation. However, when concerns would arise related to people with disabilities, she would often be called in. She recounted a story about how one day, a group of Blind individuals were touring the White House, when the tour guides walked up to them and grabbed them by the elbows and started pushing them around – thinking they were being helpful. “At that point,” she recalled, “the White House realized that they really had a problem with understanding how to deal with the disabled community. They would pull me in randomly every now and then to help them in certain situations. I had to go around and give a couple of speeches on how to deal with the disabled community and how there were all these different groups and how you act one way to this group, and act another way to this other group. What was always interesting to me about that, was that they never actually hired someone to do the job, and they really needed someone to do the job.”
Alioto experienced some of this disregard towards accessibility for people with disabilities firsthand while she was working in the White House. Much of her work, including delivering policy briefings, took place in the West Wing. At the time, there were parts of the White House, specifically the West Wing, that were inaccessible to people in wheelchairs.
“At one point I went in to see the vice president's lawyer and said ‘There are parts of the West Wing that are inaccessible and since the ADA’s just been passed, you should probably bring all this stuff up to spec.’”, she said. The lawyer responded that he would send her request up to the vice president’s senior staff, but a few days later, he returned saying that the senior staff was not going to make any changes because they didn’t believe the White House was covered under the Americans with Disabilities Act (ADA), as you needed special privileges to enter it.
Alioto knew that this was untrue – all federal buildings were actually covered under the Rehabilitation Acts of 1973-74, which predated the ADA – so she brought some of her personal lawyers into the West Wing to inspect it. “They wrote up a very detailed letter about how we were going to sue them under the ADA,” she said, “and I gave that report to the vice president’s lawyer and said, ‘We’ll give you 10 days and we’re going to file this’”.
She also warned the vice president’s lawyer that she was going to alert the vice president himself. “What happens is that the vice president loses his stuff when he finds out – he gets furious. He tells everybody to make the changes, and within six months they make all the changes to the West Wing,” Alioto said.
The interesting end to this saga, she said, was that they realized that the previous president, George H.W. Bush, had the blueprints drafted to make the entire facility up to ADA standards before he had left the White House.
As she worked to dismantle structural roadblocks that discourage the disabled community from partaking in politics, Alioto had to simultaneously work against those structures. When asked how or if she has seen things improve for disabled individuals in politics in the last thirty years, she said, “Things have changed – you never see a political ad without closed captions… you always have sign language interpreters at events, there are always accessible places to go at events. But that’s sort of the frosting on the cake to make it look pretty – when you really get down into it, the policies themselves are still a real fight.”