News
Waiting. Whether it’s waiting for a red light, waiting for a loved one to come home, waiting for a package to come in the mail, or waiting for something else, whether we like it or not, waiting is a part of life. Some people do it better than others, but, generally, people don’t enjoy waiting. The saying, “patience is a virtue” comes to mind when we discuss the challenges of waiting. In a past entry, I talked about how people with disabilities are generally pretty good at waiting because basically we many times we have no other choice than to since we depend on assistance from others. However, we aren’t the only ones who need to have patience. The people who we work with and interact with often need to have some patience as well.
Having severe physical limitations, things take much longer to complete most of the time. Things as simple as grasping a straw to take a sip of water or hitting a button to open the door can take me a lot longer than the average person. With the type of cerebral palsy I have, when I’m under any sort of pressure to do something, my body freezes. When my brain tells my muscles to do something under pressure, it’s like they lock up. It’s not only frustrating for me, but it’s also frustrating for people who help and interact with me.
My mom, dad, sister and close friends understand this pretty well and know not to rush me most of the time. However, like everyone else, they occasionally get impatient and get frustrated with me. They know it’s part of my disability and that I’m trying my best, but, sometimes, understandably it’s frustrating to wait for me to do the simplest of things. They get irritated with me, and, often, want to just quick do whatever the task is for me. Sometimes, that isn’t possible though. For example, when I’m talking to them using my communication app on my phone, they often try to guess what I’m trying to say before I’m finished typing it. Now, others who use communication devices absolutely hate when people do this; however, I personally don’t mind. If they guess wrong, I just continue typing. If they guess right, we can just move on with the conversation faster.
It’s frustrating when others close to me don’t understand this. I remember one family Christmas a few years ago, I was trying to talk to a family member about something, and the person got up and walked away while I was trying to talk to them. I realize the person did this because they didn’t realize I was trying to talk with them, but that is so frustrating. People who don’t realize that often things take me longer, don’t know to wait for me.
Sometimes, even though it’d be much quicker to have someone help me, there are things I like doing independently. This is the case for many people with disabilities. While we appreciate the help, sometimes, it’s gratifying to be able to do things by ourselves. This example is funny, but it demonstrates this point well. For me, I’m able to physically use a tissue to blow my nose myself. As weird as that sounds, you have to understand the skill it takes to grab a tissue and hold it up to your nose yourself when you have limited fine motor skills. Would it be easier and quicker to have someone hold the tissue for me? Absolutely, but it’s something I can do independently. Other people with similar circumstances use opening a door as an example. Would it be faster if someone else opened it for you? Sure, but independence is such an important thing.
Over the last few years, I’ve seen many doctors for various reasons. One thing I’ve noticed is that for whatever reason doctors seems to be patient with me. Most of them wait for me to communicate, and usually don’t look to my mom for what I’m trying to say. I’m impressed by this. Maybe it’s because they know me well enough to know to wait. It’s nice—I really appreciate it. I wish others would follow.
I fully admit, I lose my patience with myself and others from time to time. It’s human nature. Living with a disability has taught me lots of things, but patience is one of the biggest things. In my situation, I literally have to be patient with my body. If I try to rush things, it’ll likely end up taking me significantly longer. People who get to know me learn this pretty quick most of the time. People who don’t know me well get frustrated waiting for me to do things. While I understand, unfortunately, I can’t change that. It’s something I deal with on a daily basis, and I’ve learned to try my best, and accept that some people will never understand why things take me longer. Patience is truly a virtue, and, while some have more than others, waiting is something everyone has to do to some extent. All the time—but especially during the holiday season this year—remember people are doing the best they can. Be patient with others. Take the time to talk to people. Try not to rush people. Life is too short!
***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.
DISABILIY SCOOP: COVID-19 Vaccine Should Go To Those With Developmental Disabilities First, Advocates Say
By SD Network, 2020-12-10
With a COVID vaccine on the horizon, many disability advocates feel people with disabilities aren't being prioritized enough in distribution plans. Initial recommendations that the first phase of the vacancies would go to health care workers and people in long-care facilities. Research shows that people with developmental disabilities are much more likely to die from COVID - 19. The concern is that while some people with disabilities who are living in nursing facilities would likely be in phase one, many others with disabilities living in group homes, supported living, or in their own home receiving services won't get the vaccine right away.
DISABILITY SCOOP: Pandemic Helpline Launches For People With IDD, Caregivers
By SD Network, 2020-12-10
As the pandemic continues, a new 24-hour support line is working to help individuals with developmental disabilities and those who care for them cope during this tough time. Known as Project Connect, the telehealth line is free and available anytime for people with disabilities, their families, caregivers and other members of their support teams across the nation. The helpline is staffed by graduate students of the Stony Brook University School of Welfare with supervision by licensed social workers. Callers can receive support, guidance, and referrals
This is an interesting opinion article about the value people with disabilities bring to the economy. It's written by a teacher who witnessed first-hand some of the values of people with disabilities. Several different topics related to disability equality are discussed and she brings up many interesting points.
The 2020 Election was like no other. Between happening in the middle of a pandemic, the controversy counting votes, the increased notion of voter fraud, and the delayed Presidential transition process, it's likely that this election will be talked about for years to come. Despite all of the challenges, voters with disabilities may have turned out more than people anticipated. It will be awhile before all of the statistics are available, but so far, it appears likely that more people with disabilities participated than ever before. It also appears that fewer barriers were reported than in a "normal" election.
STREETINSIDER: Wisconsin First State in US to Offer Free Online Courses for Family Caregivers
By SD Network, 2020-11-20
The Wisconsin Department of Health Services (DHS) and the Greater Wisconsin Agency on Aging Resources (GWAAR) recently announced a partnership with Trualta, a new free online educational tool for family caregivers across the state. It helps caregivers learn about health issues, care techniques, and managing care for clients during the flu season. The modules provide caregivers information about how to safely provide clients hands-on care, how to connect families with support agencies, and other resources in an easy to use format.
What’s your story? Tell us a little bit about yourself
Emily is originally from Darlington, WI. Her family moved to Stevens Point, WI her junior year of high school. She graduated from Mid-State Technical College with an Associate’s Degree in 2010. She shares that around that time, she was diagnosed with Asperger’s Syndrome (a form of autism).She worked in assisted living facilities and then moved to Madison in 2017. She has been recently working in an office doing clerical work.
How are you involved with Self-Determination? Why did you join the SD Network?
Since moving to Madison, Emily has been involved with the Autism Society of South Central WI. She is the Administrative Assistant for the Autism Adult Support Group. She is also on the planning committee for INTEGRAL Autism Conference. “INTEGRAL means Interactive Networking, Talks & Education for Growing Autism Legitimacy. This conference is geared toward young adults on the autism spectrum. However, everyone is welcome to participate,” she explains.
Emily worked at and now volunteers for Prosperity Pathways and Onward and Upward. She shares that Prosperity Pathways is the ultimate work-at-home source with guaranteed employment positions for remote and onsite jobs. They share the tips, tricks, and techniques to be successful in getting hired. We are growing and getting more job-ready training programs underwritten by sponsors leading to immediate employment in different industries. Onward and Upward helps people who do not have a home and do not have access to a computer.
Tell us some good news: What’s the most exciting thing happening for you (or in Wisconsin) in terms of Self-Determination?
Emily is excited that they were able to hold the INTEGRAL conference virtually on October 24th, 2020. She’s also excited that she recently moved into her own apartment.
What tip or resource would you like to share with people who want to be more self-determined?
Emily encourages people to be confident and to stick up for themselves. She says, “use available resources and know who you really are."
What are some of your hobbies?
Emily enjoys doing such things as reading, biking and hiking. She also loves to read, color, do puzzles, and play cards and board games.
***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.
WISCONSINSTATE JOURNAL: Direct-care workers, at risk during COVID-19, need raise, benefits, groups say
By SD Network, 2020-11-18
A recent survey found that nearly half of Wisconsin's direct care workers work a second job to support themselves. Advocacy groups behind the survey are urging the state Legislature to implement the recommendations from the Governor's Task Force on Caregiving which includes rate increases and possible providing benefits such as paid time off and health insurance.
CNN: Cybathlon tournament showcases life-changing tech for people with disabilities
By SD Network, 2020-11-18
Most people don't think twice about completing simple tasks such as slicing bread or doing laundry, but for people with disabilities, technology equipment often help them do these basic tasks. Cybathlon is a global competition for people with physical disabilities to compete in performing everyday tasks using state-of-the-art technologies. It isn't a competition, it's used to showcase new technologies available.
HEALTH TRANSITION WISCONSIN: WINGS Briefing Paper: Advancing Guardianship Reform and Promoting Less Restrictive Options
By SD Network, 2020-11-13
The briefing paper linked below is a summary of the work done by national Working Interdisciplinary Networks of Guardianship Stakeholders or WINGS. The Administration on Community Living (ACL) provided funding to the American Bar Association (ABA) to administer grants to states. WI did not receive a grant, but under the leadership of Judge Shirley Abrahamson, formed a workgroup and received technical assistance from the (ABA). The WI WINGS group played an instrumental role in passing the WI Supported Decision-Making legislation Wis.Stats.Ch 52. (2017 Wisconsin Act 345), resulting in a Supported Decision-Making Agreement in state statute.