Planes, Prayers & Planning
May 07, 2024For the past several months, I’ve been working on a book about some of the unique challenges faced by families with disability. The research and reflection required for this project (more on that later) has caused me to revisit some of the big and small road blocks, detours and dead ends of our family’s experience over the past 25+ years.
Today’s newsletter addresses some of these and provides recommendations and resources for how to manage them in your family. Succeeding at this is vital to creating a sense of belonging for you and the people with disabilities you care for and about. Otherwise, they (you and we, often, too) remain on the outside — always looking in but never feeling fully included, welcomed or valued.
Please share this information with people who might benefit, and let me know here about other topics you’d like addressed in future issues. As always, thanks for being here.
Belonging is the thing that matters most. Having a sense of belonging leads to flourishing in every environment, big and small, from your home to the culture at large.
—Susie Wise, Designer and Professor
Time for take-off.
Memorial Day is the official start to summer. For many families, that includes vacation travel, adventure, and disability-related challenges. If you expect to be flying soon, educate yourself about the Airline Passenger’s Disability Bill of Rights. It’s real. It’s enforceable. And it’s your newest tool to fight discrimination.
You may also want to check out the global Sunflower network of retail, tourism and transportation organizations (including more than 200 airports and so much more) committed to helping families with hidden disabilities. Since its launch in 2016, the network has expanded throughout Australia, Belgium, Canada, Denmark, Ireland, the Netherlands, New Zealand, the UK, the UAE and the USA to raise awareness, conduct trainings, and create a more inclusive, understanding society. So many wonderful resources available here.
Lastly, I love the idea of house-sitting for people with mobility issues. As one mom explains here, it’s a cost-effective way to see other parts of the world and a great alternative to traditional hotels. What do you think?
Worship woes.
For people who want to participate in organized religion and regular worship outside the home, belonging to a community of like-minded souls is vital. Unfortunately, many places of worship alienate families with disabilities. First, religious communities are not required by law to have accessible spaces and are also exempt from some of the ADA’s employment standards. Additionally, even well-intentioned religious and lay leaders can assume incorrectly about a person’s ability or desire to participate in or understand religious rituals. Often people are simply afraid to ask questions that can help make services more inclusive for fear of offending. Like other readers, my family has personally experienced all of these and more. Each made us feel unwanted, less than, and different. And all were based on a lack of knowledge or understanding.
The National Catholic Partnership on Disability offers tools and training materials to advance belonging and serves as a model for other faiths. So does this parent support group in Louisiana, which was started by a couple with two sons who have autism. Amy Kenney’s book, My Body is Not a Prayer Request, seeks to help change readers’ mindsets and mentalities around healing and disability in and outside of the church. It all starts with asking important questions. Please share your experiences below to help other readers make positive changes where they live.
School safety.
A year ago last week, 21 people were killed in a mass shooting at an elementary school in Uvalde, Texas. Although we can’t control all aspects of their world, we can work to keep students safer in school. For those with disabilities, this requires us to plan ahead for how to protect them from an active shooter.
I wish I didn’t have to write about this, but wishful thinking still isn’t enough in the U.S., where there have been more than 200 mass shootings so far this year alone. Following the terrible tragedy at Sandy Hook Elementary School in Connecticut, we made evacuation planning part of our son’s IEP. Working with staff and administrators, we developed and practiced protocols for every new grade, teacher, classroom and building. Here’s helpful information to help you do the same.
Learning opportunities.
June 8, 6-7:30 pm. EST — Free Introduction to Supported Decision-Making Webinar. Learn about options to guardianship that enable adults with disabilities to work with trusted friends, family members, and professionals to help them understand the situations and choices they face, so they may make their own decisions.
June 14, 3-4:00 pm EST — Free webinar on navigating healthy relationships/boundaries for young adults with disabilities sponsored by Elevatus Training. Register here.
Another Normal is a free e-newsletter for parents, caregivers and others committed to helping young adults with disabilities bloom and grow. The archive of issues includes curated news and information on employment, independent living, government supports, disability rights, sexuality, travel, recreation and more.
If this copy was forwarded to you, sign-up for your own copy below. And welcome to our community.
Interested in learning more about one-to-one coaching? Contact Kris for information on what this might look like for you, including outcomes, availability, fees and more.
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