A child winning a trophy. A person accomplishing something amazing. Someone conquering a fear. An individual achieving a longtime goal. What do these things have in common? The feeling of pride. According to Google, the definition of pride is “a feeling of deep pleasure or satisfaction derived from one’s own achievements, the achievements of those whom one is closely associated; or from qualities or possessions that are widely admired.” In the last quarter century, the concept of pride has taken on another whole meaning. Many minority groups have leveraged the idea of pride into their culture. Minorities have begun dedicating specific months to celebrating their culture. February is African American month. June is gay pride month. Disability pride month is July.

“I struggle with the concept of disability pride,” I told my mom as we were driving to the Self-Determination YouTube Channel retreat in Madison a few weeks ago. We were talking about the Madison Disability Pride Fest that was happening the next day. For multiple reasons, we weren’t able to attend this year, but my mom and I got on the topic of disability pride. In late July, I was on a panel that presented for the Leading Learning Agency Webinar Series. There were 350 people listening and the topic was disability rights. Most of the questions were about disability pride. I was telling mom how some people probably didn’t like my answers because I have a very different opinion about the whole idea of disability pride than many people do.

In my personal opinion, the word pride means proud. When you have pride in something, you feel proud of whatever it is. Am I proud of the fact that I have a significant disability? Unlike many people, I can’t bring myself to say I am. In fact, I can firmly say that I am not. I really admire anyone who can say that they’re proud of having a disability –what a strong individual you must be! The whole idea of disability pride is very similar to the disability awareness months. In a previous entry, I discussed my views on those. I’m not a fan of focusing solely on one’s limitations. Personally, the last thing I want is attention drawn to my disability.

Having said all that, I’m all for celebrating how far people with disabilities have come. Or, I should say how far society has come in including people who have disabilities. The concept of disability pride was started to celebrate the passing of the Americans with Disabilities Act and the rights and protections it gives to people. The 33^rd anniversary of the ADA was at the end of July. I think Disability Pride month is twofold. Obviously, it’s important to acknowledge and celebrate all that has been able to be accomplished thanks to the ADA. It’s great to recognize all the things that people with disabilities are able to do because of the ADA. I also feel that the concept of Disability pride acknowledges the fact that people with disabilities still don’t have the same opportunities as their non disabled counterparts. Simply put, it serves as a reminder that we, as disability advocates, have more work to do.

Being a self-advocate and also working in disability advocacy, I find myself always trying to find a balance. I’m not proud of having a disability, but I’m proud of what I’ve been able to accomplish despite having some extra barriers to overcome. In my opinion, advocating for what you need and sharing your experiences isn’t necessarily prideful. I believe advocacy is about educating others. Am I proud of the fact that I’m helping others learn what it’s like living with a disability? Absolutely; however, that doesn’t mean I am proud of having a disability. I also feel there’s a difference between accepting your disability and having pride in having a disability. I acknowledge and accept that I have a disability—it’s a part of my life. However, I don’t take pride in it.

I also feel like the people first language debate comes into play here as well. In a previous entry, I talked about how even though there continues to be a move away from the people first language, I still prefer to use it. Maybe I’m just too self-conscious, but I hope that people view me as the person I am first. Sure, obviously especially with physical disabilities, people are going to associate me as having a disability, but I hope they see the person I am first.

Over the years, it seems like more and more people have pride in being disabled. Maybe it’s because society is embracing the concept of disability more. Maybe it’s because people with disabilities feel like they are more united. While I personally can’t say that I have pride in having a disability, I have the utmost respect for those who do. Probably not our lifetime, but, someday, there won’t be any pride needed because society will be so inclusive that differences won’t matter!

***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.

On April 18, 2023, President Biden signed the Executive Order on Increasing Access to High-Quality Care and Supporting Caregivers, which included more than 50 executive directives aimed at almost every cabinet-level agency. In response, PHI has produced a five-part fact sheet series examining the executive order relevant to the direct care workforce. Specifically, this fourth fact sheet offers ideas for federal regulatory policies and inter-agency collaboration that would enhance equity for direct care workers.

View fact sheet

The Department of Transportation is in the process of finalizing regulations to require many new commercial airplanes to more accessible for people with disabilities. The regulations would require new single aisle aircrafts that seat 125 passengers or more to have a large enough restroom for a person with a disability and an attendant.

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Meet Richard. When he’s not working at the Department of Revenue, he’s either advocating on the Arc board or participating in one of his many hobbies. He loves going to the Self-determination Conference each year where he meets new friends. He encourages people with disabilities to advocate for what they need to live a prosperous life in the community. We’re so fortunate to have him as member of the Network!    

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

Richard was born and raised in Connecticut, but now he currently lives in Madison, Wisconsin. He shares that he has mild autism and has done numerous amazing things independently. He has worked for the Wisconsin Department of Revenue for almost 32 years.

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

Richard explains that he first got involved with Self-Determination when a friend, Nancy Alar, talked to him about what Self-Determination is. He has attended the annual Self-Determination Conference at Kalahari Resort for many years.

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

An exciting thing for Richard is that he is a board member and self-advocate for the Arc-Dane County in Madison.  He shares that he has excellent math and cooking skills, and he’s very outgoing and friendly. He is very committed to his job at the Wisconsin Department of Revenue.

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

Richard encourages people who have disabilities to advocate for the accommodations they need to be able to live and work in the community. " Also, I would treat every single person with disabilities with respect, inclusion, acceptance, and love,” he says.

What are some of your hobbies?

Richard has a variety of hobbies which include: cooking, traveling, riding his bicycle, bowling, mini golf, going to high school football games, and making new 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.

Are you a person self-directing your services, a family member or friend assisting someone to self-direct, or a direct care worker in a self-direction program?

If so, we want to hear from you! Please complete our survey by Friday, August 11th. This survey will take you about 10 minutes to complete. 

We are leading a new project sponsored by Elevance Health to improve worker recruitment and retention in self-direction programs.  The survey responses will inform a white paper on the impact of the workforce crisis on self-direction featuring practical insights and advice from those with lived experience.

We are hoping our survey will reach a wide audience. Please share this survey with others who self-direct, family members, and direct care workers in your network.

Thank you for your help!

As the national caregiver crisis continues, people who it affects the most weigh in on what they're facing, why caregivers are quitting, and what could be done to help solve the problem. This article in the Madison Magazine explains the brutal reality for so many families in Wisconsin.

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Need someone to talk to? Call UpliftWI

 New phone service offers peer support statewide

The Wisconsin Department of Health Services (DHS) announces a new phone line is now available allowing all Wisconsinites to share their successes and challenges with a peer who will listen and offer support. Built by Mental Health America of Wisconsin under a grant from DHS for people experiencing mental health and substance use concerns, UpliftWI can be reached at 534-202-5438 daily from noon to midnight, with 24/7 operation expected by the end of the year. This non-emergency service is free and confidential.

“We’re pleased to partner with Mental Health America of Wisconsin on this expansion of peer services in Wisconsin,” said DHS Deputy Secretary Deb Standridge. “The peer-to-peer support offered by UpliftWI is a proven way to help people get the help they need and stay healthy. This service is going to improve lives by providing preventive care for people experiencing stress or other challenges in their lives.” 

View the entire news release.

Finding your seat on airplane is challenging for anyone, but for people who have visual impairments, it's usually impossible to find their seat independently. United Airlines is working to change that by installing Braille signage to the interior of their planes.

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