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Richard Branson. Jeff Bezos. Elan Musk. Michael Strahan. Those are just a couple of the famous people who took a trip into space recently. Yes, there have been other people who went who had significant connections to space, but these trips have been funded by well-known billionaires. I had a chance to watch news coverage of the most recent one where the famous football player and news broadcaster, Michael Strahan, went up to space.

Ever since I was young, I have had an interest in outer space. My junior year of high school, I did my multi genera research project on John Glenn, who was a famous astronaut. Watching the coverage of the space launch made me think about what if I wanted to go? Albeit a little scary at first, but I can’t imagine how cool it’d be to be totally weightless. What would happen to my muscles? Now, realistically, that’d probably never be possible because obviously I’m nowhere close to being a millionaire, but I was thinking about the principle of it—what the if a person with a disability could afford it and had the desire to go? I did a quick Google search and found out that it cost over $55 million to go to the space. That’s just for one person and I’m assuming it’s for only a few minutes like the recent trips have been. Right now, very few people in general could afford that, but, as more and more of these trips become reality, the cost will likely eventually decrease. There is already talk going around about a “space tourism industry.” Will people eventually vacation in space? It’s bizarre to think about, but it seems like it’s quickly becoming reality. This brings up a frequent question in the disability community--will it be accessible?

When Bezos went to space this past summer, a meme went around on social media saying something to the effect, “Another billionaire went to space today. If this is possible, why can’t people who use wheelchairs fly without having their wheelchairs wrecked? Why can’t air travel be inclusive? “That wasn’t the exact quote, but the point was that if regular civilians can go to space, we should be able to make air travel inclusive. As a person who has experienced having their wheelchair ruined by the airlines, I completely agree with the statement. A few years ago, I wrote a journal entry about how my chair was ruined on a trip to Vegas. Unfortunately, it happened on the way there, so it kind of wrecked the vacation for my parents and I. Since then, when I fly, I take my manual wheelchair which makes me dependent on others for almost everything.

In my opinion, there’s a bigger issue around this conundrum. Considering we’re in the 21^st century, why shouldn’t everything be inclusive? People with disabilities are one of the largest minorities in the world. When inventing new things and opportunities, regardless of what they are, inclusivity should be a factor in development. Yes, I understand this would make things more expensive and complex, but it’s time. I think back to my entry about the Eagle Tower in Door County--that’s a perfect example. It was knocked down due to safety concerns, and, when it was rebuilt, it was made accessible. Did it take longer and cost a lot more? Absolutely, but now a lot more people can enjoy it.  

While the Americans with Disabilities Act and other laws have made a lot of things accessible, there is often a sense of frustration when people find out that things will take longer or cost more because they need to be made inclusive for everyone. As a person with a disability, knowing that people are frustrated because they have to wait longer or more money has to be spent to make something accessible, it saddens me. Am I not worth the wait or extra money? Now, of course, there are things that just can’t be made accessible. For those things, alternative options often can be made available. An example of this would be adaptive sports. They obviously aren’t the same as regular sports, but people with various limitations can experience what’s it’s like to play and compete.

Engineers are designing new airplanes and automobiles every day, why can’t we figure out how to get wheelchairs on planes? Yes, I understand it would take many years and billions of dollars to replace all the time airplanes, but, if we can send civilians to space, why can’t we figure out how to make wheelchair accessible cabins? Something doesn’t add up. While I understand the need and desire for extravagant recreational experiences, where does the need for accessibility fit in the priorities of the country? It’s definitely an interesting question to ponder. If we can send civilian tourists to space, we should be able to take flights in airplanes without our vital equipment being damaged. Unfortunately, I don’t foresee anything changing anytime soon. We, as a disability community, have to continue to make sure that we are seen and heard. That’s the only way changes are going to happen.

***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.

Mitchell International Airport in Milwaukee recently launched a program to assist adult travelers who have disabilities. Through the Hidden Disabilities Sunflower Program, adult travelers who have hidden disabilities can get a bright green lanyard with sunflowers on it to identify to airport employees that they may need a little extra assistance. The Airport staff will make sure people wearing those lanyards will get the extra assistance they need. 

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Meet Stefanie. Growing up with a sibling with a disability shaped her outlook and passion in life. She runs an organization that supports families who have loved ones with disabilities. She enjoys making self-determination the center of peoples lives. She encourages people to set goals for the future. and tell your family and friends about them, so they can support you. We’re so fortune to have Stefanie as a member of the Self-Determination Network.

What's your story?  Tell us a little bit about yourself.

Stefanie grew up in Colorado and Wisconsin with a brother with autism. She shares that growing up with him really shaped her worldview about disability and belonging. She attended UW-Madison studied child development and then got a Masters Degree in Social Work. As a student intern, she heard about the Self-Determination Conference and got to attend for free. As her college career wrapped up, she learned about an incredible opportunity through the Waisman Center, where she could work with families like hers to help create a better future for their loved ones. “That work with families led to the creation of LOV-Dane, which became LOV Inc. (Living Our Visions Inclusively) in 2020. I've been the Executive Director of LOV Inc. for the last four years and feel very lucky to get to do work that I'm so passionate about. I love talking to families from different parts of the state and hearing about their hopes and dreams for their loved ones with disabilities. It is such a privilege to be able to be part of their journey while they make the best possible life for their loved one. At LOV Inc. our focus is on helping people figure out what they want in life and claim the power to make it happen,” she says.

How are you involved with self-determination? Why did you join the SD Network?

While most of her work nowadays is with parents and siblings of people with disabilities, Stefanie explains that LOV Inc. has a major focus on self-determination for individuals with disabilities. Their staff team is part of the Living Well project and they spent the last few months reviewing the Rights Toolkit, which was a great starting point for many discussions. When they work with families or individuals with disabilities, they always make space for listening deeply to what is important to them in their life, and helping to navigate through any barriers they're experiencing. “I love being part of the SD Network to connect with other people doing similar work to us, and learning about new ideas people come up with,” she excitedly exclaims!

Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?

Stefanie explains that in recent years, LOV Inc has focused on diversity and equity, in addition to inclusion. This year, they've been able to expand their work with Spanish speaking families by hiring a Family Resource Specialist who is Latina. Alejandra Espejo has been connecting with families and helping them dream big for their child's future, including their child living a self-determined life. They've done a lot of education on supported decision making and rights, though these terms have different meanings to Spanish-speaking families. “Bringing the idea of self-determination to a new culture is challenging, but definitely worthwhile,” she says.

What tip or resource would you like to share with people who want to be more self-determined?

Stefanie thinks it is easier to be self-determined when you know what you want. She encourages people to set goals for your future, talk with close friends and family about what you want your life to look like, and then ask for the support you need to get there. She says, “If the future feels too far away, think about the life you want to have six months or a year from now, and find a way to take small steps toward that life. Many people are rediscovering who they are after COVID, so you're likely to find a lot of other explorers on your journey.”

What are some of your hobbies?

When she’s not busy working, Stefanie likes to do calm and soothing activities. She attends yoga classes at a studio near her house, work on jigsaw puzzles with family and connect with my friends. She’s looking forward to life after COVID when it will be easier to travel safely. There's a lot of places in the world that she still would like to see. London is probably at the top of her travel list right now, but she would be happy to even be able to visit friends in Washington state next year.

***We love hearing the views and opinions of Network members. We need to mention that the views and opinions expressed on this site are those of the person who is sharing them. They do not necessarily reflect InControl Wisconsin or any of our supporters and funders.

A $1.9 trillion bill that includes many different supports for home-and-community-based care and senior services was passed by the House of Representatives recently. The next stop is the Senate. Advocates are urging the Senate to follow suit. 

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A bill that would make a historic investment in Home-and-community-based services and other supports for people with disabilities is one step closer to becoming law. The House recently approved the "Build Back Better Act" which would invest millions in disability services.  The amount is much smaller than what Biden originally proposed, but, if passed, it'd be the largest amount ever to go to home-and-community-based services. The bill now goes to the Senate which is likely to be quite a hard bill to pass. 

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Why doesn't the disability community have more political power? There are over 61 million people living with a disability and yet  they still have little involvement in the political arena. There are several different factors that cause this. Things such as ableism and being forced to live in poverty to qualify for needed services attribute to this this. This article lays out several different factors and explains what needs to be done to fix this. 

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Advancements in video game technology have made it possible for people with disabilities and health conditions to be able to experience outdoor environments without having to leave their house.   At a time when visitation to national parks and other outdoor sites is booming, video games have become an unlikely assistive tool, a new pathway into nature tourism for people  with a disability or chronic illness.

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A research firm recently did a study on the affects Electronic Visit Verification ( EVV) has on care. It found that evv has a significant impact on care a person receives. Many interviews were conducted of participants and workers, and it revealed that the evv has major burdens on both parties. It also found that the system was built based on a poor understanding of how the services are given. 

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