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Everyone dreams. When people dream, amazing things happen. People do the unthinkable in their dreams. A dream can be funny, scary, inspirational, enlightening, and motivational. Dreams can be a source of hope, but they can also be a reality shock when you wake up and realize it was truly just a dream.
Once in awhile, I get asked if when I dream, I’m in a wheelchair or not. Fortunately, for me, in the dreams I’ve always had a disability. I don’t remember many of my dreams, but from the ones I do, I never recall being “normal.” I’m thankful for that because I think it’d be hard to wake up from a dream where I didn’t have a disability, and realize it was truly just a dream.
For whatever reason, it seems like I have memorable dreams during stressful times like the holiday season. This happened three or four years ago, but I still remember the dream as clear as day. I dreamt that I walked down the hallway of my elementary school. It wasn’t a normal walk; I had leg braces on and I was teetering, but I walked independently down the hallway. I remember for some reason my confirmation leader was there, but I unfortunately don’t remember anything else. I have absolutely no idea what brought that dream on, but I find it very interesting that it was so vivid. I wish I hadn’t woken up so quickly, so I could have “seen” what else happened.
I’ve also had dreams where I’ve been in a relationship with a significant other. I think these dreams are brought on by upcoming gatherings with family and friends. As much as I try to be ok with being single, when I’m around family and friends who have seemingly perfect relationships, it’s human nature to desire that as well. When I dream that I’m in a relationship, I still have Cerebral Palsy, but the significant other usually doesn’t have a disability. While dreams like these are fun to occasionally have, as one would guess, they aren’t the greatest to wake up from. It can be a pretty big reality check when you realize it was just a dream.
I’ve had friends and family members tell me that they’ve had dreams where I’ve all of a sudden gotten up and walked or said something perfectly. Years ago before she passed away, my grandma told me about a dream she had. Her sister who passed away and I were in it. Out of the clear blue, I said three words as clear as possible. The words were “I love you.” My grandma couldn’t believe it. She was so excited to tell my grandpa in the morning. I find it fascinating that my friends and caretakers have had dreams where I’ve stood up and walked or randomly verbally said something perfectly. Dreams like those must be awesome to have, but I don’t know how I’d react if I a dream like that. I think it’d a be reality shock.
It’s always fun to dream. I never knew what it’s like not have a disability, so I don’t usually see my disability until I’m faced with challenges related to it. In my dreams, it seems natural to me that I have Cerebral Palsy because I’ve always have had it. As much as I’d love not having a disability, I do and it has become part of life that I’ve learn to accept.
We all dream every night. Dreams energize our imagination. They give us a glimpse of what in some cases is the possible. It’s nice to dream, but we have to remember it’s truly just a dream!
***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.
The Minnesota Department of Human Services created an awesome video series entitled, "Introduction and Guide to Supported Decision Making," that discusses the right of individuals to be integrated into their communities including the right to make their own choices, regardless of a disability. The introduction is done by Johnathan Martinis, a well-known guru in supported decision making and disability law.
ADMINISTRATION FOR COMMUNITY LIVING: CMCS Releases CAHPS Data on Experiences of Medicaid Enrollees with Disabilities
By SD Network, 2017-11-28
In the Fall of 2014, the Center for Medicaid and CHIP Services (CMCS) conducted a Nationwide Adult Medicaid Consumer Assessment of Healthcare Providers and Systems (CAHPS) survey of Medicaid enrollees to attain national and state-by-state measures of access, barriers to care, and experiences with care across delivery systems and major population subgroups.
The survey interviewed a representative sample of adults ages 18 and older enrolled in Medicaid between October 2013 through December 2013. This first-of-its kind survey provides baseline information on the experiences of low-income adults prior to a state’s expansion of coverage to the new adult group that took effect on January 1, 2014. This data will be used to inform federal and state efforts to improve health care delivery for Medicaid enrollees.
Untrained service animals continue to be a problem across the country. In parts of Wisconsin, real guide dogs have been attacked by fake service animals. People who use service animals say it's frustrating and dangerous when people try to use their pets as guide dogs.. More education and awareness about service animals is needed to help prevent laws from being exploited.
GOVERNMENT TECHNOLOGY: Section 508 Gets an Update: New Web Accessibility Guidelines for Government Sites Take Effect in January
By SD Network, 2017-11-22
New accessibility guidelines for government websites will take effect in January. The guidelines mandate that federal government websites must be accessible for people with hearing and visual impairments who use screen readers and other assistive tech. The requirements also mandate that content needs to be accessible for cognitive, language, and learning disabilities as well.
NATIONAL COUNCIL ON DISABILITY: Neglected for Too Long: Dental Care for People with Intellectual and Developmental Disabilities
By SD Network, 2017-11-22
The National Council on Disability (NCD), a nonpartisan, independent federal agency, released an issue brief entitled, “Neglected for too Long: Dental Care for People with Intellectual and Developmental Disabilities.” The brief provides insight concerning the lack of dental care many individuals with intellectual and developmental disabilities continue to experience due to a shortage of properly trained dental care providers. The brief also explores the neglect for the protection of people with disabilities found within the American Dental Association’s Principles of Ethics & Code of Professional Conduct. It also contains recommendations from the NCD about what actions need to be taken to improve dental care for people with disabilities.
More and more vacation accommodation websites are making efforts to be accessible for people with disabilities. Airbnb, a lodging rental company, recently announced it's coming out with a new website that will accommodate people with various types of disabilities. It's a platform for short-term rentals. It will have options beyond just the common "wheelchair accessible" choice.
November 2017
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We want to congratulate this year's Diehard Award winners who were recognized at the Self-Determination Conference. These individuals received a Diehard Award for going above and beyond in supporting the lives of people with disabilities. Please help us congratulate and thank these people for their outstanding advocacy efforts:
David Pinno
Sue Urban
Take five minutes to check out what's happening on the Self-Determination Network:
- Watch: Watch this excellent short video done by The Arc designed to speak directly to people with developmental disabilities about supported decision-making and getting help making decision.
- Caregiver Act: A bill that would address the needs of family caregivers is gaining support. Learn how this act would help families.
- Unique Fashion Line: More and more fashion designers are designing clothes for people with disabilities. Find out which popular designer recently launched an adaptive clothing line.
- Accessible Airport Kiosks: One airline has incorporated new technology into their self-service kiosks to ensure they are accessible to all travelers. Read about these new kiosks.
- States Tighten Leash on Service Animals: A growing number of states are enacting laws designed to keep people from passing off their pets as service animals. Learn what states are doing.
- Smart Home Products Increase Independence: Smart home products are often marketed for their convenience, but the technology also can help people with disabilities become more independent. Read about how thousands of technology products have opened up a world of possibilities for people with disabilities.
- Building Full Lives Grant:The Wisconsin Board for People with Developmental Disabilities in partnership with In Control Wisconsin is offering a great opportunity for organizations Interested in supporting individuals with disabilities to Build FULL LIVES in the community. Applications due November 17th.
- Interesting Court Case: This in an interesting case about glass-front vending machines not being accessible. Find out why the Supreme Court declined to review the case.
- Successful Aging: As people age, they may experience new and chronic health conditions that make it difficult to participate in activities at home, at work, and in the community. A study showed that there are four areas that people felt were important for successful aging with a physical disability. Learn what the areas are.
- ABLE Account Annual Contribution Limit: It was recently announced that the total annual contribution limit to an ABLE account will increase in 2018. Find out how much it will increase.
- Polling Place Accessibility: A new report found that less than 20% of polling places were fully accessible during the 2016 election. Read about what's being done to try to correct it.
- Hunting Bill: The State Assembly passed a bill that would allow people with disabilities to hunt from a car with a lift. Read about the bill.
When most people hear the word “segregation,” they automatically assume it’s a negative thing. However, at times, that’s not the case. It’s human nature for people to associate with others like them. In this month's entry, Stacy discusses how, as a person with a physical disability, she often struggles to fit in within the disability community. Have you had similar feelings? We encourage you to share your thoughts and experiences as well.
Here's a sample of upcoming events listed on the Self-Determination Network:
- Webinar: Interdisciplinary Care Teams For Older Adults: December 7th, 11a.m. to 12:30p.m., Online
- WisconsinSibs: Journey Forward : February 17th, 8:30a.m. to 1p.m., Easterseals, Waukesha, WI
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.
Most children are taught not to discriminate or segregate at a very young age. Regardless of age, race, religious belief, sexual orientation, economic status, or disability, as a society, we are made to believe that everyone is equal and nobody is the better than anyone else. In theory, all types of people should be mixed together all the time. While thanks to laws passed in the 1950s, this notion should be technically true, but it isn’t realistic. Segregation still happens in today’s world. People may not realize it, but we all have bias. When most people hear the word “segregation,” they automatically assume it’s a negative thing. However, at times, that’s not the case. It’s human nature for people to associate with others like them.
As I’ve shared in past entries, I was brought up believing I should do everything like everybody else despite having a disability. Obviously, there were things I wasn’t able to do, but that was life. Attending therapies isn’t a normal activity for most families, but it was for mine. My parents did whatever they could so I could participate in normal childhood activities. My dad adapted hundreds of things so I could use them. My mom was a Girl Scouts leader so I could participate in activities. My parents never put me in respite; instead, I had regular baby-sitters. I never went to special needs camps; I went on vacations across the US (and beyond) with my family.
The only time that I was classes with other kids with significant disabilities was when I was in Early Childhood classes when I was really young. From Kindergarten on, I was in all regular education classes. Some years, I had with a modified gym class where there were other students with all types of disabilities and health conditions, but that was it. Since my disability is so apparent, I made a very conscious effort to try not to associate with students who had intellectual disabilities—especially in high school. That sounds really bad of me, but it was so important to me to do all that I could to prove my cognitive abilities to my classmates.
When I got to UW-Whitewater, obviously that all changed because Whitewater is known for serving students with disabilities. There was no need for anyone to prove their cognitive abilities since we were in college. It’s true; people with similar circumstances tend to befriend one another. I made friends with people who had various disabilities, but I also had friends who didn’t have disabilities. It was when I first really realized that there were other people who had similar abilities. It was also the first time I got involved in disability advocacy. Whitewater had a student organization for disability advocacy. It was the first time I was a part of something that focused on disabilities. Again, students with and without disabilities belonged, and there wasn’t a need to prove anything to anyone. It was a cool experience.
It wasn’t until after college that I realized just how seemingly segregated adults with disabilities are. Everything from finding appropriate cares, to finding an apartment, to finally landing a job, it took lots of time and effort. There are lots of services available for people with disabilities, but the reality is that most of them are geared towards people with intellectual disabilities. Yes, most services are customized to the individual, but generally speaking I’ve found that many of the services were developed for those who have intellectual delays. Those of us with physical disabilities like myself often have to pave our own path and piece together services to meet our situations. While personally I’m happy I can do this, sometimes it does get frustrating that it seems “people with disabilities“ get thrown into a general category. In no way am I belittling people who have intellectual disabilities, but, for me, especially since my speech is affected, people assume that I have cognitive delays. As one would guess, this can be incredibly frustrating.
Services aren’t the only thing like this; many of the disability conferences and trainings are more for those with intellectual disabilities. This by no means is a negative thing, but, personally speaking, I find it hard to fit in at those events. A lot of it probably has to do with the fact that while I obviously understand and accept that I have a disability, I normally don’t think of myself as being different; I don’t focus on that. I’m also not used to being with lots of people who have various disabilities. Recently, I attended the Self-determination Conference. I worked the exhibit table for InControl Wisconsin. I loved meeting and talking to so many people, but, even before we got there, on the way there, I told mom it was segregation. Again, it doesn’t mean it’s a negative thing. It’s just a fact that people with all types of disabilities were gathering in one place. I personally again felt the need to prove my cognitive ability. In my opinion, a lot of the events and activities were meant more for people with intellectual disabilities. I understand that it’s the majority of people who attend these events, so it has to be catered to that population; sometimes, I just wonder if I should be there.
Thanks to my amazing family and friends, I don’t usually think of myself as having a disability; I know people I love see past my challenges and see me for the person I am. People with disabilities in general are in a minority; those of us with physical disabilities are even fewer in number. We just have to continue fighting for what’s right and paving new paths!
***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.
We want to congratulate this year's Diehard Award winners who were recognized at the Self-Determination Conference. These individuals received a Diehard Award for going above and beyond in supporting the lives of people with disabilities. Please help us congratulate and thank these people for their outstanding advocacy efforts:
- David Pinno
- Sue Urban
- Deb Wisniewski
- Abigail Tessmann