By Shelby Rowe Moyer | Photography by Hillary Schave
Being differently-abled can encompass a varying level of abilities, living situations and day-to-day routines. Figuring out how to best navigate daily life, which includes outings to public places that may or may not be accessible, is part of the territory — but local organizations and individuals are actively working to make Madison inclusive to everyone.
In many ways, the Disability Pride Madison Festival held at Tenney Park is like any other — there’s live entertainment, food and art vendors. But a few key differences have historically set it apart, says Jason Glozier, the former disability rights and services program specialist for the City of Madison’s Department of Civil Rights.
Glozier, who is now with the Wisconsin Coalition of Independent Living Centers, says that at the Disability Pride Madison Festival, interpreters are present for all stage performances; all stages have ramp access; and quiet, air-conditioned tents are available for those with heat and sound sensitivities. Plastic flooring is also laid down in strategic spots throughout the festival for wheelchair accessibility.
“[Festivals] are great opportunities to create environments where people with disabilities can be performers, can be spectators, can be full participants in these environments,” Glozier says.
As of 2020, all Madison festivals are required to provide additional layers of accessibility, including stage access, proper seating, accessible restrooms, paths and parking and even festival promotion and communication. It’s
easy to take these things for granted, but ultimately the ability to use the bathroom or see a stage can make or break a participant’s experience at an event.
In general, being able to fully participate and engage in an environment is an often overlooked and underappreciated privilege for those who are considered able-bodied and neurotypical (which is a person who doesn’t have a cognitive disability). Things like navigating stairs and uneven terrain, easily moving through tight corridors, tolerating loud spaces, comfortably hearing and seeing what is going on around us — these are all aspects of daily living that many of us take for granted. But for some people with disabilities, they can become major obstacles that block access to places and experiences, and limit independence.
“When you have a disability, you realize how inaccessible the world really becomes,” Glozier says.
Twenty-six percent — or one in four — adults in the U.S. have a permanent disability that impacts major aspects
of their lives, according to the Centers for Disease Control. This may include difficulty with mobility, loss of hearing or vision or cognitive disabilities.
The odds of being temporarily disabled due to an injury, pregnancy or mental health issue is also relatively high, according to the Council for Disability Awareness. The council states that one in four of today’s 20-year-olds will be
out of work for at least a year because of a disabling condition before they reach 65 years old. Each year, about 5% of working Americans will have a short-term disability of six months or less. In other words, the odds are good that disability, whether it’s minor or life-changing, will likely affect us all at some point during our lifetimes.
If you don’t have any issues with accessibility, you may not give a second thought to how a space is designed. But for someone with limited mobility, a quick jaunt to a local shop might be impossible if the shop has steps at its front entrance — and no wheelchair ramp. And think about how many businesses you visit that have tight spaces or little room for navigation between tables.
Glozier says he’s been surprised at times at how little progress has been made in accessibility. One day, he and his friend (who is the ADA coordinator for the Wisconsin DNR) decided to travel up and down State Street to see how many buildings his friend — who uses a wheelchair — could get into.
“It’s the 2000s, I thought, it can’t be that bad,” Glozier recalls. “Out of all the businesses on State Street, we found 32 that were entirely inaccessible, and that really highlighted a significant problem with access to the city.”
“We’d like to get away from businesses thinking of ‘minimum compliance’ for accessibility, and utilize best practices of inclusion.”
Diagnosing the Problem
A 2019 study conducted by Downtown Madison, Inc’s (DMI) Beyond Compliance Task Force revealed some key hindrances that discouraged people with disabilities from coming downtown.
Of the roughly 90 people that responded to the study, 63% said they experienced mobility barriers. Lack of accessible parking, uneven sidewalks and busy crosswalks were common issues.
Although the study focused on downtown, Jason Beloungy, chair of the Beyond Compliance Task Force, says there are inaccessible buildings throughout the city, of course. “[But downtown] is concentrated, so it’s obvious, and that’s
… noteworthy. But we’d like to get away from businesses thinking of ‘minimum compliance’ for accessibility, and utilize best practices of inclusion. This should be a focus [for businesses] — so how can we get there?” he says.
Infrastructure is one of the most expensive, and therefore challenging, obstacles to address, says Beloungy, who is also executive director of Access to Independence, a local nonprofit that provides advocacy, services and resources to people of all ages with all types of disabilities.
Adapting the exteriors and interiors of buildings so that everyone can navigate them or creating more accessible parking, for example, are among the most obvious solutions — but take the longest to correct, Beloungy says. It’s incredibly expensive to renovate the exterior of an existing building to remove stairs and add a ramp which is why it can be challenging, he says.
So instead of getting hung up on this difficult problem, the task force, as well as Access to Independence, are working hand-in-hand on more attainable solutions. Access to Independence has an Accessibility Services Program that is providing accessibility assessment and technical assistance services for businesses and organizations in the region. The task force is handling accessibility at festivals and events, within the Streatery program and is planning a forthcoming event.
When the City of Madison launched its Streatery program in response to the pandemic, the task force created a set of standards and best practices restaurants could use. The guidelines took into consideration things like placing tables next to trees with low-hanging branches, which could be dangerous for a person who is blind or has low vision.
Beloungy says measuring the impact of the task force’s education and guidelines is something they hope to provide in the near future.
Beyond adaptation, Beloungy says the task force is planning to host an event this summer that will bring together architects, designers and people with disabilities, so that new construction and renovations are designed in a way that is truly accessible. Based on the feedback from people with disabilities as well as agency observations, even new or renovated buildings can have flaws or be inaccessible. The reason being: ADA compliance standards have a lot of gaps or may conflict with local ordinances that make navigation challenging. Automated doors, for instance, are not required
by the ADA. Even parking lots aren’t designed with accessibility in mind — with ramps and sidewalks located too far away from accessible stalls, forcing people to navigate through vehicle traffic to get to them.
The hope is that by bringing industry professionals and people with disabilities together, best practices in inclusive design can be incorporated during the design and construction stages. Partnerships are the linchpin of all of the work Beyond Compliance is doing, he says.
“Instead of people pointing at each other and saying things need to be better, we need to bring people together and [ask ourselves] how can we change it? Otherwise, we don’t get to the root of the problem,” Beloungy says.
Living with a Disability
At birth, Jennifer Diedrich was diagnosed with Spina Bifida — “the most common permanently disabling birth defect that is associated with life,” according to the Spina Bifida Association. Researchers and medical professionals still don’t know exactly what causes Spina Bifida. The condition happens in utero when a fetus’s neural tubes don’t fully develop, and so the spine is split. Usually, this happens within the first month of pregnancy, when the neural tube is forming. Spina Bifida has varying levels of severity, from having very little to no effects, or in the most severe cases, the spinal cord is damaged making it difficult for a person to feel or control the lower half of their body. Diedrich has the most severe type, known as Spina Bifida Cystica.
For Diedrich, that means that parts of her spinal cord and nerves come through an open part of her spine, causing nerve damage and other disabilities. Diedrich also has hydrocephalous (water on the brain), so she has a shunt in the left side of her head that drains excess cerebrospinal fluid into her stomach. Hydrocephalous is also common for people with Spina Bifida Cystica.
For approximately the last 20 years, Diedrich, who lives in New Glarus, has used a wheelchair to get around. Throughout the years, her disability has worsened, she says, and she can’t move her lower body without help or the use of her hands.
Because she relies on her wheelchair to get around, going somewhere new requires additional layers of planning. Doors can be a challenge. Some are very heavy and so she needs someone to hold it open for her. Stairs are another obstacle.
“I’ve lived in New Glarus for 12 years now, and there are certain buildings or restaurants that I’ve never been in because there are steps [or some obstruction] to get into the building,” she says. “I do notice it. If I want to go somewhere, I look to see if there are steps [to get in].”
For the most part though, she says she can go out and do the things she wants to do. A handful of shops and restaurants in downtown New Glarus are easy for her to get in and out of on her own, and there are several parks in the area that she enjoys visiting.
“I stick to places I know I can get in and out of on my own,” she says. “… People don’t realize sometimes what’s accessible until they’re in a situation themselves, unfortunately, or they’re helping me in some way, and they realize what I can and cannot do.”
Abigail Tessmann — who founded Transit2Go, a program she created to teach people with disabilities how to use and navigate the bus system, and a disabilities advocate who has cerebral palsy — says she wishes more people would understand what having a disability may encompass, and how people who are differently-abled have varying abilities.
Tessmann says her cerebral palsy doesn’t affect much of her day-to-day life. Cerebral palsy is a neurological condition caused by brain damage in utero that most commonly affects motor and movement skills. The inability to drive is probably the most limiting aspect of her disability, Tessmann says. She has tremors, difficulty with fine motor skills and balance is challenging if she’s on her feet for too long.
Her need for greater independence is what led to her mastery of the bus system, and now she teaches other people with disabilities how to feel comfortable and confident taking public transit. She rides the bus with clients during her training sessions and explains that they can ask the driver for accommodations, like help getting on and off the bus or requesting that the driver wait until they’re seated to pull away from the bus stop. In other words, some of what she helps instill is self-advocacy — for clients to be brave enough to voice their needs.
In general, Tessmann is sometimes frustrated with the lack of consideration when it comes to public spaces and how the design or operation of those spaces don’t take into consideration the varying needs of the people who frequent them.
She says the Hilldale Target is an ideal example of accessibility. To get in and out, guests can take the stairs, the escalator or the elevator — which offers options for those with varying abilities.
Other design elements such as larger wayfinding signage, bathrooms with adult changing tables, places to sit
and rest and disability training for employees would make visiting some places easier, she says.
Workplace accommodations supported and followed by management and staff also make it easier for people with disabilities to live and work independently. Petra Zwettler — who has been working for the Forest Products Laboratory in Madison for the U.S. Forest Service for the last 15 years — has epilepsy which causes unpredictable seizures.
The support she gets from her supervisor Robert Ross has been life- changing, she says. Ross is a supervisory research engineer at the Forest Products Laboratory and he and Zwettler have volunteered and also been on the board of The Arc-Dane County, an advocacy and rights organization for kids and adults with intellectual and developmental disabilities.
Ross says he remembers the first time Zwettler had a seizure at work, and she was laying on the floor of the office. “So, we bought her a camping mat and a pillow. When she has a seizure, she can lay down and we’ll [check in to] see how she’s doing. You’ve got to have an organization that’s willing to do that and be observant of little things.”
Ross adds that a lot of workplaces will hide behind the fact that it’s illegal to ask someone about their disabilities. “But you can observe, and you can understand if someone needs something and then you can address it.”
Zwettler says the laboratory has provided a very supportive work environment for her (pre-COVID, when staff were working at the office). She feels safe asking for help and contributing her perspective. Her opinions and feedback have also affected change The Arc-Dane County, when she’s given input about event management and how official meetings are run.
Anyone can be an advocate, and anyone can be an ally, says Ross. You just have to listen, observe and speak up.
Aside from advocacy, economic impact is often a driving force for change, says Beloungy. Businesses are motivated to adapt if it means more customers, more clients, more profit. And that’s a meaningful incentive. But accessibility comes down to caring about fellow community members and their ability to participate in anything they choose,
“I think we should care about this because we have a segment of our community that’s being excluded from enjoying things,” he says. “Whether that’s employment, education, housing, public spaces or businesses. We have people in our communities who don’t get to enjoy the community the same way. If we find that acceptable or make excuses about why it’s acceptable, that’s a problem.”
Countless organizations exist locally that help meet the needs and protect the rights of people with disabilities. They include, but are not limited to:
- Access to Independence A local nonprofit that provides advocacy, services and resources to people of all ages with all types of disabilities in south-central Wisconsin. They focus on an Independent Living Philosophy, which centers on “providing specific services that help people with disabilities live as independently as they choose.” accesstoind.org
- The Arc-Dane County. A nonprofit serving adults and children with intellectual and developmental disabilities — as well as their families — to ensure their rights are being upheld and that they are being given opportunities. Provides education, advocacy, support and a legislative voice. arcdanecounty.org
- The Beyond Compliance Task Force — Downtown Madison, Inc. A committee within Downtown Madison, Inc. that works to “identify, support and promote projects and economic opportunities that make downtown Madison more inclusive and accessible to people with disabilities.” downtownmadison.org/our-work/inclusiveness
- Disability Rights Commission — City of Madison Provides policy recommendations to the mayor, city council and department of civil rights, makes recommendations to city departments and other committees and commissions regarding facilities and services and collects comments and concerns from people with disabilities and the organizations that serve them. cityofmadison.com/civil-rights/programs/disability-rights-services-program/disability-rights-commission
- Disability Rights Wisconsin Offers legal advocacy and rights protection for Wisconsin adults and children with disabilities, including issues surrounding civil rights, abuse and neglect, access to services and education, crime victimization and discrimination. disabilityrightswi.org
- Home of Our Own An apartment community in New Glarus that intentionally integrates people with disabilities and neurotypical/able-bodied tenants to provide a rich living environment for everyone who chooses to call it home. homeofourown.org
- Movin’ Out Works with people with permanent disabilities to help them find and maintain housing, whether it’s home buying assistance, rehabbing homes so that the owner can safely and accessibly continue living there or helping individuals find rental housing. The organization is based in Madison, but serves people throughout Wisconsin. movin-out.org
- Transit2Go A hands-on public transportation training program that takes people with disabilities through the City of Madison bus system so they can learn how to comfortably navigate the process with the goal of being able to gain more independence. transit2gonow.com