News
Most adults have some degree of privacy. Growing up, parents usually teach kids what should be kept private and what’s okay to share with others. Parents often gradually give their children more and more privacy as they grow up. From very basic things early on, such as using the restroom by herself/himself, to more complex things as they grow up, like dating, children are taught the concept of privacy. When we become adults, we decide our own level of privacy. When people find her/his significant other, they often share private things with them. Privacy is a human right. In many scenarios, it keeps our dignity as people. For people with disabilities, having any degree of privacy often is nearly impossible.
As a pretty avid disability advocate, I’m generally a pretty open person. Since I believe part of my purpose in life is to educate others on what people with disabilities can do, I share my personal experiences, thoughts, and emotions with others in these journal entries, videos on the YouTube channel, media interviews, presentations, and other avenues. It’s my way of feeling like I’m helping others. While being open is part of my personality, I think having a significant physical disability has forced me to be open. Let me explain.
As I’ve explained in several of my previous journal entries, I need physical assistance with all of my basic needs. I need somebody to literally undress me, lather me up and rinse me in the shower, and get me dressed again every day. Every time I use the restroom, somebody needs to pull my pants down, clean me up after I go, and then pull my pants back up. I share these examples not to invoke any sort of pity, but rather to demonstrate how little privacy somebody with significant physical limitations may have. Obviously, I don’t really have other options in these circumstances, and I’ve, in essence, “gotten used to it.”
Physical body privacy isn’t the only sort of privacy people with disabilities often lack. Recently, I ran into a situation where a care worker quit because she read text messages on my phone between my mom and I talking about her. Now, yes, we were wrong to be talking about her (I was complaining she was lazy and always causing issues), but she had no business reading my messages. It wasn’t like I was texting right in front of her either; she had to have gone into my phone and read them when I was out of my chair (my phone is mounted on my chair). Yes, I realize I could have a passcode enabled to open my phone, but that brings up more issues (if I had to enter a passcode every time I use my phone, things would take me even longer to do). What really irritated me about this situation is that the worker obviously knew I use my phone and specifically text messaging as my main means of communication with my parents, and she felt she had the right to go in and read my messages. Really? I guess maybe I put too much trust in people. Again, my mom and I acknowledge we were wrong to be talking about her, but it’s tough when I rely texting to communicate.
Another thing people with disabilities often have little to no privacy with is finances. Many rely on government assistance to live. When you receive government financial assistance, one has to report any income and assets she/he has. There is a review done regularly for eligibility for Supplemental Security Income (SSI). I live in subsidized housing, and I have to do an annual recertification where I have to provide all of my financial information. The information is used to determine what my rent is for the year. While I understand why this needs to be done, it can be a little daunting. Providing the information year after year is not only time consuming, but it can also mess with emotions. While I’m not ashamed that I need government assistance, it’s not something I’m proud of or want to be reminded of either.
Having little to no privacy in life isn’t fun, but it’s something I’ve learned to live with. When you rely on others for so much physically, you try to savor any dignity you can. It can be as simple as being able to pick up a Kleenex to blow my own nose. As silly as that sounds, using a tissue myself takes a lot of concentration and effort, but I do it because I’m able to. I realize I’m fortunate that I’m living in my own apartment. While I gripe about having limited privacy, people who live in group homes or facilities have even less.
Privacy is one of the few things that’s hard to modify. It’s something that we, as people with disabilities, have to try to figure out how to persevere on an individual basis. For myself, I realize that giving up some privacy also means that I’m able to be as independent as possible. That sounds like a weird analogy, but by having people come in to help me, I’m able to live independently. That’s what I try to remember when I have issues with privacy. It’s part of this unique journey I’m on called life!
***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.
CNN: Covid-19 has disproportionately impacted those living with developmental disabilities
By SD Network, 2020-08-29
As we all know, this pandemic has been hard on people with disabilities. People have Lost access to critical support they need. Sometimes, people have a hard time understanding web-based technology. Some people don't understand why or what they need to do to protect themselves. There has been some guidance on the safe care and support of people with intellectual and developmental disabilities, it's still evolving and hasn't reached all the places where it's "desperately needed."
FORBES: Disabled Nurses Find Covid-19 Silver Lining; Hope For More Inclusive Future
By SD Network, 2020-08-27
As devastating as this pandemic has been, more and more silver linings are being found. One unique positive outcome is that nurses with disabilities are getting hired. Before the pandemic ,nurses who have physical limitations had a hard time landing a job.. Hospitals didn't believe they could perform the job duties. However, due to the dire need for nurses, hospitals are beckoning more open-minded.
What's your story? Tell us a little bit about yourself.
Jane is the Vice-President of Knapp’s Development, which is the management arm of Lori Knapp companies. They provide a variety of supports to self-directed individuals throughout Wisconsin that include fiscal agent supports and the purchasing of authorized products.
Jane resides in beautiful Prairie du Chien with her husband of 42 years. She has three children and eight grandchildren. She’s on the Governor’s Taskforce for Caregiving, serves on the Wisconsin Workforce Alliance Board, and is a member of the Wisconsin Personal Care Services Association. She also serves as the President for the Futures of Prairie du Chien which is a scholarship program for graduating High School Seniors.
How are you involved with self-determination? Why did you join the SD Network?
Jane explains that 13 years ago their company began fiscal agent services for those who self-direct. “We quickly saw how self-determination brings autonomy and choice to people’s lives in so many different ways. Their lives are richer, fuller, and more enjoyable. I strive to bring self-determination initiatives forward for the greater good,” she says. About five years ago, she and another co-worker brought forth the work comp insurance initiative for those who self-direct which resulted in lower cost premiums and an avenue to ensure that caregivers were covered in case of injury.
She joined the SD Network because it is a great way to connect to like-minded people, share ideas and hear the many success stories.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Jane shares that being on the Governor’s Taskforce for Caregiving, they are developing proposals to attract more caregivers to this workforce so they can provide assistance to those in need of supports. Ever possible avenue is being explored. Caregivers play such a vital role to Wisconsin residents and their role in an individual’s daily life is so important. Self-determination and the value it brings to people is widely recognized by the Governor and Department of Health Services. “This is exciting,” she exclaims!
What tip or resource would you like to share with people who want to be more self-determined?
Jane says, “don’t be afraid to ask for help.” She explains that there is so much information out there and so many services being offered. It can be overwhelming so it is helpful to connect with experts in this field or those who have gone through similar experiences. The Aging and Disability Resource Center in your area is a great way to start. She also suggests that people connect with others like himself/herself for support and ideas.
What are some of your hobbies?
Living on the Mississippi, Jane enjoys boating and biking where there is beauty all around. She and her husband spend a lot of fun times with their kids and grandchildren. “They tend to keep us very young and active,” she says. She also enjoys time with her lifelong girlfriends and taking some quiet time to read a good book.
***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 WASHINGTON POST: As restaurants take over sidewalks to provide pandemic-safe dining, people with disabilities encounter barriers.
By SD Network, 2020-08-24
As the pandemic goes on, many restaurants are creating outdoor dining areas. The option allows people to enjoy going out to eat safely; however, these outdoor areas often create more barriers for people with mobility limitations. Many of the outdoor areas block sidewalks that people rely on.
ADMINISTRATION FOR COMMUNITY LIVING: National Paralysis Resource Center High Impact Innovative Assistive Technology Grant Applications Due September 15
By SD Network, 2020-08-24
ACL's National Paralysis Resource Center (managed by the Christopher & Dana Reeve Foundation) opened the new grant application cycle for the High Impact Innovative Assistive Technology (HIIAT) grants program with applications due September 15. Eligible applicants are restricted to state programs funded through the State Assistive Technology Act, including implementing agencies and agencies subcontracted for Assistive Technology activities.
Launched in 2015 in partnership with ACL, the National Paralysis Resource Center’s HIIAT grant program is a competitive grant program that awards a small number of one-year grants of up to $75,000. These additional grant funds will help state programs expand their reach in the field of assistive technology through new innovations that will impact people living with paralysis in their homes and communities. Funding for this new cycle of grants was made possible through a cooperative agreement with the Administration for Community Living.
Awarded grant funds support innovative programs or services that:
- Target a specific, well-defined underserved population within the broader disability community in their state;
- Through assistive technology devices or services, increase access to services, increase the independence or inclusion of people within the underserved population within their communities; and
- When complete, will have a demonstrable, direct impact on people affected by the project.
Applications are due September 15.
Previously funded organizations are eligible to apply, however past grantees must submit proposals for new and innovative projects. Past grantees must also be in good standing, having successfully closed out past grant awards with a final report outlining accomplishments and fully expending grant funds awarded.
Please see the Foundation’s HIIAT program webpage for more information and contact the Quality of Life grants staff at QOL@ChristopherReeve.org if you have any questions.
SPECTRUM NEWS 1: 'You’re Stronger than What You Think You Are’: Wisconsin Hunter Inspires People with Disabilities
By SD Network, 2020-08-24
Hunting is a popular hobby in Wisconsin. After an accident left him paralyzed, this man from Rio found ways to do things he still enjoys. Martinson participates in Wisconsin's deer gun hunt for hunters with disabilities and he hopes he inspires others to find their own strength.
The pandemic has made work and social life more accessible for many. Everything from work to cocktail parties have gone virtual. People with disabilities are wondering whether virtual accommodations will last. Having everything virtual has made it possible for many people to participate in things that they otherwise wouldn't have been able to.
It's well-known that COVID-19 spreads quickly in congregate settings. In May, it was mandated that nursing homes report COVID cases to the government and they had to notify residents and families. However, despite many outbreaks, no such rules are in place for other types of institutional settings.
NORTHWEST ADA CENTER: Face Coverings and Business: Balancing the ADA with Public Health During COVID-19
By SD Network, 2020-08-12
In response to the COVID-19 pandemic, many states and local governments have issued mandates for people to wear face coverings when entering businesses such as shops, restaurants, and other establishments. There has been some confusion over these mandates the the ADA as some disabilities make wearing a face covering hard or not possible. This FAQ from the Northeast ADA Center explains some of the misunderstandings.