Michigan Developmental Disabilities Council Storytellers for Change
Profiles in Inclusion
Denial of Diagnosis and Medical Self-Advocacy
Jacqueline Cuevas talks about the trauma that occurs when family and doctors deny your disability, the self-advocacy it took her to get a correct medical diagnosis and the treatment she needed and her feelings of not having a place, because she was “too abled for the disabled and too disabled for the abled”.
Stephanie Laird deeply values her independence (even when it entails doing the housework). She discusses the stigma and condescension she faces: people assume that because she uses a walker, she has an intellectual disability as well. Though she says that “Transportation is the biggest barrier of all,” she dedicates the majority of her time talking about the significance of her husband to her and the urgency of eliminating marriage penalty.
The Marriage Penalty
“Treat us like people: don’t treat us like we’re different.” (Lilah). Despite being widely known in their community as a couple, Jason and Lilah Baker face the marriage penalty. Additionally they discuss the compensation of their direct support personnel.
“I feel like this is my calling: to help others with disabilities explore their potential.” Frank Vaca discusses his work on employment and as a sexual self-advocacy trainer.
You can learn more about Green Mountain Self-Advocates at https://gmsavt.org/. You can learn more about the Elevatus Sexuality and Developmental Disabilities Training at https://www.elevatustraining.com/.
Employment and Faith
Erin Oldaugh discusses the importance of her faith and how much she enjoys her role providing A/V support in her church services. For more information on Erin, see the Fox 2 News profile of her.
The Marriage Penalty
Ceretta Willis and James Wesley, approaching their 30-year anniversary, talk employment, home ownership, but mostly about the consequences that the marriage penalty has had for them in terms of both financial uncertainty and family relationships.
A user and an expert on assistive technology
Kellie Blackwell is the Co-Director of the Michigan Assistive Technology Program and the Assistive Technology Specialist at the Michigan Disability Rights Coalition. She talks about the barriers to inclusion she experiences and the variety of technologies she uses in her own life to circumvent those barriers, as well as the Assistive Technology Act and the technological resources and education Michigan makes available to people with disabilities.
“Don’t leave your choices to someone else”
“Don’t leave your choices to someone else.” Anna Dusbiber, Programs Coordinator with the Ann Arbor Center for Independent Living, discusses the difficulties she had in making educators and school administrators understand her vision of an inclusive life for herself when she was a young person. Now that she is an adult working in social services, her mission is to make sure young people with disabilities begin making their own plan for transition early in their education.
From Chinese language student to disability rights advocate
Holly Hollins discusses her journey from living abroad in China to disability rights advocacy. She also discusses the very personal decision of when to disclose your disability to your employer.
“Speak up and speak loud.”
“Inclusion means not only having a seat at the table, but everyone at the table having their voice heard.” Izzie Bullock discusses the physical and systematic exclusion she has encountered in her life. Her advice to lawmakers: “Sometimes inclusion is an afterthought. … Now we need to go back and fix it. But when writing a law or passing a law, inclusion should be in the forefront.” As the Employment Program Manager at the Ann Arbor Center for Independent Living she discusses the benefits to employers of hiring people with disabilities. Izzy’s parting advice: “Speak up and speak loud.”
“Before you can talk about inclusion, you’ve got to live inclusion.”
“Before you can talk about inclusion, you’ve got to live inclusion. So get out there. Let people know who you are, what you’re doing.” If you are passionate about it, even if you can’t physically do the main activity, find a role for yourself. Sheryl Stumbaugh discusses her passion for adaptive sports and the struggle to remain in her community. Many renters won’t accept Section Eight housing vouchers and have suggested that she live someplace else. But she doesn’t want to live someplace else, because she is a part of that community and her natural supports are there.
The Importance of State and Local Governments
“On the ground, really, your local and state government are who needs to hear your voice.” Renee Echols, Peer Support and Advocacy Specialist at the Ann Arbor Center for Independent Living, discusses advocating for inclusive infrastructure with your state and local government, the major barrier of the lack of funding and the challenges of speaking up when coping with challenges of lifelong trauma and internalized oppression.
Guardianship Strips Away People’s Rights
“I think guardianship is wrong for people with disabilities because it strips away people’s rights.” Sarah Carmany discusses her sense of inclusion owing to her competitive integrated employment, her supported decision-making through her circle of support and her activism through the numerous organizations she works with. “A lot of the time people have a problem with acceptance of people who are different. And I think people who are different should be included in everything.”
The Changing Technology of Inclusion
Jeanine Rowe discusses how the Americans with Disabilities Act hasn’t kept pace with technological changes in accessibility, especially the advances in power chairs. “Technology has advanced, so other things need to change with it.”
Real and Fake Inclusion
Kim Rosario discusses drumming in a death meal band, recording music, finding an accepting community among musicians, finding employment and being a parent as well as varieties of faux inclusion.
The Direct Support Professional Crisis
Catherine Hein goes in-depth about the Direct Support Provider crisis. She discusses how the low compensation levels established by the government reduces the availability of support professionals, how wage and benefit competition makes other employment more attractive to potential DSP workers and how DSPs do not receive professional respect consonant with their professional responsibilities – and ultimately how the DSP crisis undermines the independence of people with disabilities.
Angel Irvin discusses employment at Walmart, but mostly her passion for triathlons, 5ks and other endurance sports and the Adaptive Sports Club at MSU. A really good support system is the key to inclusion, but transportation short-fallings undermine Angel’s ability to work for Walmart as she and her employer would both like. “Having that freedom to go when you want to go is one of the biggest barriers to inclusion.” (East Lancing, Michigan, 1 November 2021)
Homelessness and Transportation
Tonnieo Graves tells his personal story of homelessness and discusses the difficulty of transportation for people with disabilities. (Saginaw, Michigan, 29 October 2021)
Physical Barriers Exclude People with Disabilities from Their Communities
Ronald McGough discusses the way that physical barriers to access for people with disabilities excludes people from being a part of their community and the importance of the State of Michigan making sure all locations are accessible.
Confronting Low Expectations, Stigma and Internalized Ableism
Jake Schaafsma confronts low expectations, stigma and internalized ableism. He contrast that with a discussion of how to be matter-of-fact about disabilities and interact with people with disabilities in ways that treat them with dignity.
Dominick Harper on Making Music and the Shortage of Accessible Housing
“The one thing to get people with disabilities into the community is first building up the confidence they have choices about their life.” Dominick Harper talks about making music, working with DisArt and his struggles with finding adequate accessible housing. Check out Dominick’s music at his SoundCloud.
Sharon Hall: “We need everybody at the table.”
Sharon Hall of Grand Rapids, Michigan, is a Certified Peer Support Specialist and a member of a number of advisory boards, including for the Community Mental Health Consumer Board and the Development Disability Council. Her main focus is advocating for people with developmental disabilities, mental illness and who are homeless. She discusses invisible disabilities, how underresourced the Community Mental Health system is and her vision of the broadest possible version of inclusion. “We need everybody at the table.”
Ryan Klotz’s Internship with the City Government Building and Water Departments
A discussion with Ryan Klotz about his job as a file clerk intern in the Building and Water Departments at the City of Westland, Michigan. He discusses the importance of inclusion in workplaces, the determination and adaptability of people with disabilities, and the positive affect of the presence in the workplace of people with disabilities, both for themselves and their coworkers.
About Michigan Storytellers for Change
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Michigan Storytellers for Change is a project of the Michigan Developmental Disabilities Council and TASH.