News
“Sticks and stones may break my bones, but words will never hurt me.” Many people have heard that saying as kids; however, we know that’s not true. Words hurt. In today’s world, we feel the need to put labels on people more than ever before. Racial labels, economic labels, sexuality labels, political labels… the list goes on and on. There are occasions when labeling people is necessary and helpful, but, more times than not, putting a label on someone causes hurtful feelings and an unpleasant stigma. While belonging to a minority is becoming more common in today’s society, being singled out is never fun.
A quick Google search revealed that one billion people live with a disability in the world. Yet, we are still considered a minority. For years, there has been a debate among the disability community as to how we identify ourselves as persons with disabilities and how we want others to address us when talking about our situation. Years ago, terms such as “handicapped,” “crippled,” “retard,” and “disabled” were used to describe persons with a disability.
In the 90s and early 2000s, the people first language began. It was meant to identify the person before the disability. For example, instead of saying a “disabled person,” you’d say a “person with a disability.” Of course, thankfully, the world, “retard,” has slowly faded away when identifying someone who has an intellectual disability. For a few years, “cognitive disability” was used, but now “intellectual disability” has replaced it.
A few years ago, a new movement started going back to labeling people with disabilities as “disabled.” People with disabilities want to be considered a group in society and want to communicate that disability is a normal part of life. In other words, there’s nothing wrong with being “disabled.” People want the general population to know being “disabled” is okay. Many people with disabilities consider themselves part of a unique minority and are proud of it.
You may have noticed up to this point in the article that I’ve not said “disabled people.” This was on purpose. Personally, I don’t like the term “disabled” used to describe anyone. When I think of the word “disabled,” I think of something that does not work. A disabled car, for an example. What does it portray when we use the same word to describe a broken-down vehicle that we do a person? Yes, I understand that we use adjectives to describe different things all the time, but, to me, “disabled” never should be used to describe a person. Nobody is completely “disabled.” In my opinion, the word “disabled” has a negative connotation in today’s world. Regardless of the circumstances, I believe that every single person that’s born on this earth has the ability to do something.
I’m also not fond of the idea of moving away from people first language. While I understand the idea of being seen as collective group of people in society, I like to think people see the person I am rather than a “disabled person.” Do I identity as a person with a disability? Sure, and obviously it’s a huge part of my life. However, my disability doesn’t define the person I am. When this topic comes up, I think of a quote from a children’s book I read years ago.
“I’m a person who just happens to have a disability, but that doesn’t mean that I’m a disabled person.“
~Golden Daffodils by Marilyn Gould
I understand that some people may think this contradicts being a disability self-advocate, and I can’t argue that they’re wrong; however, being an advocate and preferring a certain label are two different things. I still strongly advocate for people with disabilities; I just prefer to be categorized as someone living with a disability rather than a disabled person.
Many, in fact most, people with disabilities have a different opinion about this issue. I totally respect that. I do understand why people want that commodity of being viewed as a group or culture. There have been lots of discussions about this in my disability Facebook groups, and there are so many different opinions about this. It’s one of those controversial topics that will be debated forever because there are no right answers. Stepping back, it’s unfortunate that we are forced to put labels on everyone for everything. In a perfect world, we’d have no labels and one’s name would be enough, but that’s not the case. We have to respect each other’s preferences and be open to learning about differences. As I always say, we only get one chance to live. We have to remember to make it count not only for ourselves, but for others which means doing our part in respecting each other’s preferences.
***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.
WISCONSIN BOARD FOR PEOPLE WITH DEVELOPMENTAL DISABILITIES: Youth Leadership Forum Applications Open
By SD Network, 2022-02-05
The Wisconsin Youth Leadership Forum (YLF) is a week-long, overnight leadership training and career awareness program for high school sophomores, juniors and seniors with disabilities.
When/Where:
July 10 – 15, 2022 at Edgewood College in Madison, WI
The Youth Leadership Forum is for:
- Students who show leadership potential by being active in their school and community
- Students who have a disability (physical, learning, cognitive, emotional, sensory, etc.)
- Wisconsin residents
- Students who are currently sophomores, juniors or seniors in high school
Why Attend the Youth Leadership Forum:
- Learn more about college and career options
- Make connections with other young leaders in our state.
- Meet your state legislator
- Connect with energetic staff and speakers from across the state
- Have fun at a dance and talent show and many other memories you’ll never forget!
To Apply:
Complete the application by April 1, 2022.
Contact Jenny Neugart at jennifer.neugart@ wisconsin.gov if you have any questions.
PRESSWIRE.COM: Almost half of business leaders believe there aren't enough candidates with a disability despite over 1M disabled people wanting to work
By SD Network, 2022-02-03
New research shows that almost half of businesses believe that the key barrier to hiring people with disabilities is the lack of candidates. However, misconceptions, lack of representation, and taboos continue to be a significant factor in recruitment policies.
The National Alliance for Caregiving recently released Caregiving in a Diverse America: Understanding the Systemic Challenges Facing Family Caregivers in the U.S., a report based on results of the Caregiving in the U.S. 2020 study. The report highlights disparities in support, caregiving intensity, health and financial impacts among diverse caregivers. The report emphasizes the importance of considering culture and identity when facilitating access to programs, services and resources and tailoring support to meet the unique needs of caregivers. With much more work to be done, the report identifies key themes and areas of future research that are needed to meaningfully improve the caregiver experience.
CENTER FOR HEALTH CARE STRATEGIES: Four Ways to Strengthen the Direct Care Workforce
By SD Network, 2022-02-01
Direct care workers provide hands-on support to older adults and people with disabilities. For years, there has been a national shortage. Low wages, long hours, few benefits, and the demanding nature of the work has led to high turnover rates and this shortage. A recent report done by the Center for Health Care Strategies drew four key recommendations.
1.. Focus and organize state-level and advocacy efforts related to the direct care workforce shortage- The commitment of state leaders to a common goal is very important for making progress in the workforce shortage.
2. Use federal funding and flexibilities- the Build Back Better Act has potential, but is uncertain. There are other ways to access federal funding and flexibilities to support the workforce.
3. Prioritize DCW-related goals in Medicaid managed care contracts- Many states use managed care contracts for Medicaid services. States could use their contracts to expand and strengthen their workforce.
4. Recognize the deep value and importance of the profession- From the start, caregiving isn't consistently valued. States could promote the value and importance of the profession.
ADMINISTRATION FOR COMMUNITY LIVING: White House seeks input on strengthening community health through technology
By SD Network, 2022-01-31
The White House Office of Science and Technology Policy (OSTP) has published a request for information (RFI) soliciting information on how digital health technologies are used, or could be used in the future, to transform community health, individual wellness, and health equity. Comments are due by 5:00 PM ET on February 28 and can be submitted via email to connectedhealth@ostp.eop.gov or via phone at 202-456-3030.
The RFI specifically requests input on several areas of interest to ACL’s networks, including:
- Barriers to the use of digital health technologies in community-based settings faced by individuals or organizations. Read more
PUBLIC NEWS SERVICE: Biden Administration Aims to Expand Home-Based Care for Medicaid Recipients
By SD Network, 2022-01-31
Advocates are hopeful that the Build Back Better Act will move forward in some form. The Act aims to expand access to services for people with disabilities. This would include better pay for home-based care Workers. Lawmakers say Build Back Better will probably pass year, but it's unclear whether the $150 million tentatively saved for Medicaid Home-and-community-based services will remain.
DISABILITY SCOOP: Supreme Court Ruling Means Fewer Disability Providers Face Vaccine Mandate
By SD Network, 2022-01-24
Some workers supporting people with developmental disabilities across the nation will still be required to be vaccinated against COVID-19 despite a recent ruling from the U.S. Supreme Court blocking a wider mandate. The high court struck down a mandate requiring vaccines or regular testing for employees of big companies The court upheld a rule requiring workers at facilities, home health agencies, and other providers that receive Medicaid or Medicare funding to be vaccinated.
After a recent defeat, Disability Rights Wisconsin is moving forward. The recent package includes a paper ballot mandate which poses a problem for some voters with disabilities. The current law does not include such mandate and some voters already use accessible voting machines.
January 2022
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Disability Advocacy Day of Change
Disability Advocacy Day of Change will be held virtually on March 15, 2022. It's a event focused on connecting Disability Advocates with their legislators to talk about issues important to them. Attendees are expected to participate in the morning briefing and call their legislators in the afternoon.
Watch for registration information coming soon!
The Self-Determination Network includes some very talented members and we want to help you to get to know each other a little better. Member Spotlight is a great way for us to get to know each other better.
In December, we shined the spotlight on Stefanie. Growing up with a sibling with a disability shaped her outlook and passion in life. She enjoys making self-determination the center of peoples lives. Stop by and get to know Stefanie in the December Member Spotlight.
This month, we shined the spotlight on Jen This outgoing self-advocate does everything she can to change the world’s perception of Down Syndrome. She encourages everyone to advocate to achieve their girls and to set high expectations. Check out this month's Member Spotlight to get to know Jen.
Who should we shine the spotlight on next?
In December's journal entry, Stacy talked about how we are now sending tourists to space, but, yet, people who use wheelchairs can't fly in an airplane without worrying about our chairs being wrecked. Something doesn't add up - - she discussed how we need to make everything inclusive. Do you agree with her?
Stacy discusses how the direct caregiver shortage has become dire in this month's journal entry. Have you struggled to find caregivers?
Check out the Latest Videos!
The Self-Determination Channel is a YouTube channel by and for people with developmental or intellectual disabilities. Unlike other channels, the Self-Determination Channel stands stand out from other channels on YouTube because self-advocates host the videos, and decide and create the content. Videos are posted a couple times a month on a variety of topics self-advocates care about such as technology, employment, caregivers, independent living, and advocacy.
Check out the newest videos on the channel:
- Job Coaching and Fading
- Advocacy and Goal Setting
- A Look Back at 2021 at the Self-Determination Channel
- "Treat me like everyone else"
We encourage you to subscribe to the Channel (you can do so by clicking the red Subscribe button on any of the video pages).
Join us to Film a Video
Take five minutes to check out what's happening on the Self-Determination Network:
- Assistive Technology Brief: The National Assistive Technology Act Technical Assistance and Training Center released a new issue brief that describes how AT Act programs are supporting people who are experiencing long-term effects of COVID. Learn what these programs offer.
- EVV Study: A research firm recently did a study on the affects Electronic Visit Verification (EVV) has on care. Find what what the study revealed.
- Video Games Open Doors: 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. Read about video games have become an unusual assistive technology tool.
- "Silent Majority": 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. Read more about how the disability community continues to lack in politics.
- Largest Home-and-Community-Based Services Increase Moves Forward: 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. Read about what this bill would include.
- Take Survey: The Southwest ADA Center is conducting a study on video game accessibility for people with disabilities. The survey closes February 28.
- Airport Program: Mitchell International Airport in Milwaukee recently launched a program to assist adult travelers who have disabilities. Find out how the program works.
- Accessible Routes at Historical Museum: Recently, the Smithsonian Museum of Natural History held a ribbon-cutting ceremony to celebrate the installation of new sloped walkways for accessible entry on the National Mall side of the 111-year-old building. Read more about the accessibility change.
- State Transition Plan Submitted: The Wisconsin Department of Health Services (DHS) has submitted the updated statewide transition plan for final approval to the Centers for Medicare & Medicaid Services (CMS). Learn what changes were made.
- Cracking Down on Caregiver Mistreat: Federal officials are working to make sure that paid caregivers aren't being taken advantage of. Learn about what the Department of Labor is doing to try to prevent some of the mistreatment.
- Rate Increase: The Wisconsin Medicaid reimbursement rates for home-and-community-based services went up 5%. Learn what programs this applies to.
- The Affordable Connectivity Program: The Federal Communications Commissions launched a longer-term program to replaced the Emergency Broadband Benefit Program. Read about what the program would help ensure.
- Accessibility Awareness: In recent years, accessibility awareness has become more and more prevalent in conversation, but those conversations haven't necessarily turned into action. Read about how some people feel that accessibility should be part of the culture.
- Vaccine Information: The Administration for Community Living recently released a good informational sheet about COVID vaccines and boosters. Check it out!
- Doctors Unclear about Obligations to People with Disabilities: A new study finds that many doctors don't know their obligations to people with disabilities. Learn about what some of requirements are.
Here's a sample of upcoming events listed on the Self-Determination Network:
- Webinar: Accessible Signage: February 3, 1:30p.m. To 3p.m., Online
- Disability Advocacy Day Of Change: March 15, Online
- 2022 National Self-Direction Conference: April 11-12, Hyatt Regency Inner Harbor, Baltimore Maryland
Post your event on the Self-Determination Network and it can be included in future Network News emails to members! Questions? Suggestions? Contact Stacy Ellingen.
The Self-Determination Network is powered by InControl Wisconsin and supported financially by our members and Sponsors. We couldn't keep this Network going with you! Find out how you can help support the Network.