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For travelers who wheelchairs or scooters, flying is an embarrassing and risky ordeal. Everything from the ticket line to checking your luggage, to navigating the airport, to boarding the plane, it's often an embarrassing spectacle. The New York Times documented a person who uses a wheelchair while taking a flight. It's shocking to see what people have to go through. 

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“Don’t give up…don’t ever give up.” That was the famous quote from Jim Valvano’s famous speech at the ESPYs in March of 1993. He was a famous college basketball player and later coach who was accepting the Arthur Ashe Courage and Humanitarian Award.  Jim was courageously battling cancer. Variations of that quote have been used in many different ways in the years since his speech. It’s likely that everyone has been told “not to give up” on more than one occasion in life. Whether it’s for something as simple as a child scoring in a sports game or something as serious as a person with a terminal illness fighting to survive, hearing people say those encouraging words usually ignites a spark of encouragement in the person. The motto, “never give up,” is often heard in the disability community. For many people like myself, it’s a motto we choose to live by.

In an entry a few years ago, I wrote about how comparing our lives is human nature. It’s something we all do without even realizing it. While often comparing is a reaction to jealousy of someone’s circumstances or good fortune, it sometimes can be reflective and can make people realize how well they’re doing despite life’s obstacles. It can help people see what may be possible even when life throws you curveballs.

If you’ve been reading my entries, you probably have figured out that I’m a pretty ambitious person. Thanks to my family, growing up I was taught not to give up.  Obviously, there are some things that I want that are just not possible due to my circumstances, but, if there is a chance it could work with accommodations, I was taught to pursue it until it was accomplished. It started early on when I refused to take assignment modifications even though things took me much longer to complete than most of my classmates. It was the same with going to college, finding an apartment, and eventually finding employment. I was taught to keep fighting regardless of how many obstacles get in your way.

Over the years, I’ve witnessed many people with very similar circumstances choose to not to make use of the abilities they have. Often, these people have more physical capabilities than I do (mainly the ability to verbally speak which is huge), but don’t take advantage of them because they don’t have the ambition to jump through the so called “hoops” to get the accommodations they need. When I see this, it’s incredibly frustrating for me because I can’t help but think if I had the abilities they do where I would be. Another example is when people abuse the Social Security system. While I understand that some disabilities and health conditions are hidden, there are a lot of people who claim disability that would be fully capable of working. I can’t say much because I’m obviously on the system; however, I’m doing what I can to help provide for myself. Do I wish I was able to do more? Of course—I’d love nothing more than to be able to make enough income to be able to not be rely on the government programs, but that’s not physically possible for me.

There are many different types of “giving up.”  A few years ago, there was a big conversation among the disability community about the book entitled, “Me Before You.” It’s about a man who becomes paralyzed and he wants to commit suicide. However, because he’s physically unable to, someone else would have to assist him. There was discussion about ethics. Should someone be able to assist someone in ending his/her life if the person so desires? That’s a loaded question that has no right answer. Some people with disabilities and health conditions feel like their life isn’t worth living anymore and think it’d be better to end their life. Another example of “giving up” is when, sometimes, older people decide they have lived the life they desire and are ready to move on to the next endeavor. They Intentionally do things not to prolong their lives.

“Never give up” has been my motto for years. I used to close with it when I presented to high school students. It’s extremely hard for me to watch others not take advantage of the abilities they do have. I’m sure some people feel that I don’t take full advantage of my capabilities either; and, I respect and accept that opinion. Knowing that just pushes me to try and accomplish new things. For me, giving up will never be an option. My family and friends have worked too hard to support me in all my endeavors for me to give up on them. Sure, I have days where everything is going wrong and I feel like giving up on everything—I think everyone does, but it’s in those trying times where Jimmy V.’s words really come to fruition. “Don’t give up…don’t ever give up.”

***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.

• The Services and Supports for Longer-Term Impacts of COVID-19 Report (Services Report) outlines federally funded support and services that can help individuals experiencing the longer-term effects of COVID-19, including Long COVID and its associated conditions, mental health, substance use, and bereavement. 
• The National Research Action Plan on Long COVID (the Research Plan) proposes a comprehensive and equitable research strategy to inform our national response to Long COVID.

Meet Rachel! Between working for the state and being involved in different advocacy activities, this busy lady doesn’t have much free time. She enjoys being able to share stories and learn from others. She encourages everyone to speak up for themselves. We’re so fortune to have her as a member of the Network!

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

Rachel was born in Miami Beach Florida and then moved to Los Angeles CA in 1998. She did all of my schooling in Los Angeles CA and then moved to Madison WI in 2014.  Her favorite thing about living in Wisconsin is being able to go to her boyfriend’s parents’ cabin in the Northwoods.

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

Rachel is one of the hosts on the Self-Determination YouTube channel. Her favorite thing about being a host is being able “share stories and learn from others,” she tells us. She’s also involved in a program called Bridge Builder through LOV Inc. which helps her set goals to be independent in life. She joined the SD network to make friends and socialize with people.

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

Rachel enjoys going to work and being independent in the community. She works for the Wisconsin Department of Revenue as a revenue tax assistant. She explains that she likes her job because it varies day to day and she learns lots of new things.  

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

The tip that Rachel would give is to speak up and let your voice be heard. “The reason it’s important for people to speak up for themselves is to let their voices be heard for what they believe in and what is important to them,” she shares.

 What are some of your hobbies?

When Rachel isn’t working, she enjoys doing things like playing on her computer, swimming, and hanging out with friends and family including her dog.

 ***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.

The Centers for Medicare & Medicaid Services recently announced its first ever quality measure set for Home-and-Community-Based Services. The measures will promote “consistent quality measurement within and across state Medicaid HCBS programs.” The measures are built around three pillars: access, a rebalancing of HCBS spend versus institutional care spend and community integration. 

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Competitive, integrated employment (CIE) – working in the community, alongside people with and without disabilities, at competitive wages – offers a direct pathway to greater independence and self-sufficiency for people with disabilities. CIE is increasingly becoming the expectation across the country.

ACL is committed to expanding employment opportunities for people with disabilities. In addition to funding programs that provide direct employment support services to people with disabilities and advocating for policies and practices that prioritize and support CIE as a key element of community living, ACL also is investing in research to increase knowledge about the benefits of employment of people with disabilities – both for the individual and for the employer – and to increase the availability of effective interventions to support employment. 

Last week, as the country celebrated the 32nd anniversary of the Americans with Disabilities Act and Disability Pride Month, ACL's National Institute on Disability Independent Living and Rehabilitation Research (NIDILRR) is released a new issue brief summarizing the research supporting CIE.

Four voters with disabilities recently filed a lawsuit against a federal court. The lawsuit asks the court to ensure that voters can get assistance returning their ballot. This comes after the Supreme Court ruled that unsupervised drop boxes are illegal. However, the Court did not clarity whether voters could get assistance returning ballots by mail. 

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To mark the 32nd anniversary of the Americans with Disabilities Act, the Biden-Harris Administration released a fact sheet. It details several different topics such as civil rights, education, voting, employment, and healthcare. This provides some interesting statistics. 

View Fact Sheet