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Can you present to this group? Could you write an article about it? Would you be able to attend this meeting? Could you speak to that group? Are you available to do this? Could you do that? Questions such as these consume our daily lives. Being asked to do certain things and asking others to do things is part of life. Like it or not, humans depend on one another to live. People have a choice whether or not to oblige to the task that they are being asked to do. Depending on the situation, individuals often perform the duty that they’re being asked out of respect for the person who is asking. It may be an employer asking an employee to a task, a family member asking you to do something, or a friend asking you for a favor. Whatever the case may be, you have a choice whether or not to do it. Sometimes, people have a hard time saying no when others ask them to do something. Most of the time, people enjoy helping others and being valued, so turning down an opportunity can be difficult. People who have different abilities are no different—we have a hard time turning down opportunities just like everyone else. The truth is that people who have some limitations probably have a more difficult time saying no to things than the average person because often we can’t do a lot of things due to our circumstances; so, when we’re asked to do something that we’re able to do, we feel immense pressure to say yes.

“I’m going to try to be very intentional about what I say yes to this year,” I said to my mom one night recently. She rolled her eyes and laughed because she knows how hard it is for me to turn down an opportunity. In past journal entries, I’ve written about the importance of feeling valued. Especially when you have some unique challenges, being and feeling valued is a detrimental part of life. However, it’s also equally important to realize when you’re spreading yourself too thin. I also wrote entries about this in years past—often, I say yes to too many things which puts a lot of stress on my body. It’s a fact that everything takes me a lot longer to do things than the average person. Years ago, I read that people who have cerebral palsy exert three times the amount of energy than the average person does.

During a session a few weeks ago, I was telling my counselor about how frustrating it was to be gone from work for so long over the holidays. I explained the situation to her. She then asked me a very good question: why do you hate missing out on work and advocacy so much? I told her it had nothing to do with the financial aspect of it. As we talked more, she figured out that work and advocacy are the things that make me feel valued most. In other words, I often feel useless when I’m not doing some sort of work or partaking in an advocacy activity. Obviously, learning this opened up a whole other thing to work on in counseling, but, in the weeks since, I’ve been really trying not to keep myself busy with work or advocacy projects all the time. I didn’t realize how much I relied on those things to keep me busy.

As I get older, I’m slowly realizing that there’s more to life than always trying to prove that you’re successful. As a person with a significant disability, that’s kind of a tough thing to grasp. I’m always trying to prove that I’m a contributing member of society and my main way of doing that is to engage in as many advocacy activities as possible. However, with some help, I’m realizing that I have other things that people value me for. I’m also learning that it’s okay to take some time to do nothing.

I’ve already turned down two advocacy opportunities this year. They were events that would have taken me hours to prepare for and I honestly didn’t have much interest in either of them. Will I agree to do various advocacy things? Absolutely. I love advocating and helping people. I just have to be selective about what and how much I agree to do. I’m going to try my best to be cognizant of how much I put on my plate. It’s not worth the stress and repercussions it causes.

For some people, turning down opportunities or saying no to things is really hard to do, but life is too short to overwork and stress yourself out. It’s just not worth it!

***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.

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Starting January 1st, people with disabilities are able to save more money in ABLE accounts which are accounts that allow them to save without jeopardizing their government benefits. The Internal Revenue Service increased the federal gift tax exclusion from $18,000. The new limit is up from $1,000 last year. 

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The nearly five million direct care workers who support older adults and people with disabilities are the largest workforce in the U.S. But despite high demand, many are paid little more than minimum wage. A longstanding workforce shortage means people with disabilities who depend on those workers are left without the support they need.

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What is self-advocacy? In the 1800s, people with disabilities didn't have the opportunity to advocate for themselves. They were placed in institutions or hospitals and were not seen by the world. Big changes came in the 1960s when the civil rights movement started. The Americans Civil Rights Act of 1964 made it illegal to treat people unfairly because of their disability. The Americans with Disabilities Act later required to public services, communication, education, transportation, and other things. To be the best self-advocate is to know what to want and how to receive what you want. This column lists several points to help you advocate.

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Meet Brett. This fun-loving guy is determined to make the best of life regardless of the circumstances. He is determined to make an impact on as many lives as possible. He is working to change the long-term care functional screen to make it easier for people. We are so fortunate to have him as a member of the Network!

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

Brett shares that he was born three months premature weighing 1 lb 15 oz. Due to this, he has cerebral palsy, but he doesn’t let it stop him. “I am always determined to make it impact in as many lives as I possibly can,” he says. 

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

Brett shows self-determination by not giving up. “I keep fighting every single day of my life. My life may not be perfect, but somebody always has it worse,” he tells us. He joined the Network to make a difference. 

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

Brett is working with legislators and stand functional screen for long-term care. “This isn’t going to happen overnight, but I’m not going to stop until it is changed,” he says.

What are some of your hobbies?

Brett enjoys watching TV and playing video games. He also loves spending time with his family and friends.

***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.

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Everyone loves to travel every once in awhile. People travel to places for a variety of reasons. Traveling is generally fun and exciting, but it also can be stressful. This is especially true for many people who have disabilities. There are several things that people with disabilities have to think about when traveling. Market Watch put together a great guide of tips for people with disabilities.

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Recently, the Biden-Harris Administration announced actions and new data that will help expand home-and-community-based services. The American Rescue Plan is helping deliver $37 billion across the country to strengthen services. CMS released new guidance outlining how states can use worker registries for HCBS to make sure people have awareness and access to qualified workers.

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