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There’s a saying that goes around during this time of year that goes something like this: “as you grow older, your Christmas list gets smaller, the things you really want can’t be bought.” Similar sayings are often shared around social media. Obviously, people share it for many different reasons. Often, it could be the first holiday season without a loved one or a serious medical diagnosis that’s behind the post. The holidays can be hard for many people for a variety of reasons. For some people with disabilities, the holiday season comes with a mixed bag of emotions.
A few years ago, I did an entry about how the stress of the holidays can weigh heavy on people with disabilities. In that entry, I talked about how it can be emotionally hard for many people—not just those with disabilities—to attend all the holiday parties and events. I explained that I happen to be the oldest cousin on both sides, so, as we get older, my cousins do the normal things such as get married and have kids. I’m not sure why—probably because it’s one of the few times everybody is together—but it seems like engagement and pregnancy announcements often happen during family Christmas get-togethers. While I never ever want to take away the couple’s joy of being congratulated and everybody’s excitement for them, it’s very hard to witness. Not because I’m not happy for the couple—I truly am—but because I very selfishly desperately desire those things for myself. Knowing, due to my circumstances, I may never be able to experience those things, is pretty tough—especially when it seems like everyone around you is living the life you dream of.
Major announcements are just one of the things that may cause people to have mixed emotions during the holidays. Another thing that may be difficult for some people is finding topics for conversation. Sometimes, when you have a significant disability or health conditions, you don’t realize how vastly different your life is until you listen to others conversing about their lives. While somebody maybe worried about what color to paint a bedroom in their house or wondering what sports their child will play, I’m quietly wondering to myself which care shifts I need filled for the next week so I can use the restroom and eat. This goes beyond just myself. When we get together with extended family, my parents often find themselves in a similar situation. Especially now, since their brothers and sisters are getting to retirement age, they’re talking about plans to travel all over the place. While my parents would love to travel (probably even more than their siblings), due to my circumstances, they can’t. We try not to think of these situations negatively, but it makes us realize just how different our life Is. I’m in no way meaning to disrespect our extended family either. They do try to understand our circumstances, but, like with anything, unless you experience it first hand, you don’t fully understand. It’s just the way life is.
As the years go on, the extended family Christmas gatherings get bigger and bigger as the cousins have families of their own. Eventually, it’s going to get to the point where the big gathering on each side will stop, and each immediate family will just do their own. This saddens me to think about. Yes, my parents will hopefully be around for many more years, and my sister will always make efforts to include me in her holiday family things; however, I realize there may come a time when I’m not able to be with family during the holidays.
In recent years, social media has added another factor to the stress of the holidays for some people. For me, looking on social media on any holiday is a double-edged sword. On one hand, I love being nosey and looking at everyone’s photos. On the other hand, though, seeing people my age have families of their own makes me wish I had that.
Normally, I’m pretty good at seeing happiness through others, but, very admittedly, the holiday season can sometimes be pretty tough. Personally, nothing on my wish list can be bought, and, it has been that way for many years. I think it’s that way for many adults though. There are many different intangible things people wish for. Some are received; some unfortunately are not. This is all part of this thing called life.
The holiday season brings on different kinds of emotions for everyone. There are many different ways to deal with these. For me, personally, I find it helpful to remember all things I do have and think about all of things I’ve accomplished despite my disability. It’s challenging to do—especially during those tough times—but, we need to focus and make the best of what we do have; not dwell on what could, would, or should have been. All the time, but especially during the holidays, we need to take a moment to be grateful for all that we do have!
***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 PUBLIC RADIO: Wisconsin Receives Over $1M To Help People With Disabilities Get Affordable Housing
By SD Network, 2019-12-07
It was recently announced that Wisconsin will get more than one million dollars to provide people with disabilities affordable housing. Housing authorities across the state will get extra Section 8 (a federal rent assistance program) vouchers.
MILWAUKEE JOURNAL SENTINEL: Tony Evers signs bill to remove voting requirement that has turned away people with disabilities
By SD Network, 2019-11-23
Governor Evers recently signed a bill into law that removes the requirement for people who are unable to say their name and address because of a disability. Instead, poll workers will rely on the voter's identification card and allow another person accompanying the voter to say the voter's name and address. It's hoped because of this new law that more people with disabilities will have the opportunity to vote
More characters with disabilities are set to appear on prime-time TV this season than ever before; however, a new report finds that people with disabilities are still underrepresented. Of the 879 characters expected on broadcast programming this season, only 3.1% have disabilities.
DISABILITY SCOOP: Online Matching Service Pairs Adult Roommates With Developmental Disabilities
By SD Network, 2019-11-19
An online service that's believed to be the first of its kind is helping people with developmental disabilities find compatible roommates and settle into homes independent from their families. All of the roommates have some type of physical or developmental disability. They are matched in two- or three-person housing arrangements, with some needing an extra bedroom for a full-time caregiver. Others need a few hours of outside support each week.
DISABILITY SCOOP: Disability-Related Hate Crimes Up Sharply, FBI Data Shows
By SD Network, 2019-11-19
Recently released data indicates that hate crime incidents targeting people with disabilities are on the rise. In 2018, 177 hate crime offenses based on disability bias were reported compared to 128 the year before. According to the report, of the disability-related offenses logged, 110 targeted those with mental disabilities while 67 affected those with physical disabilities.
When the annual cost of living (COLA) increases, there's usually an increase in the Social Security and Supplemental Security Income (SSI) benefit amount. Recently, it was announced that the COLA will increase in 2020, so Social Security benefits will increase by 1.6% beginning in January.
MILWAUKEE JOURNAL SENTINEL: Wisconsin voters with disabilities face a variety of barriers. A state report on the problems is two years late.
By SD Network, 2019-11-18
Every adult should be able to vote, but various barriers continue to prevent people with disabilities from doing so. Everything from not being able to verbally state their name, to building access issues, to not being able to use the actual voting machine... Numerous problems continue to be reported across the state. Many organizations and advocacy groups are working on getting these issues addressed.
FORBES: Is It Too Late That The Impact Of Climate Change On People With Disabilities Is Getting Discussed Only Now?
By SD Network, 2019-11-18
Climate change effects everyone, but some say the disability community is the most vulnerable to things such as wildfires, hurricanes and air pollution. This article talks about the impact it has and things that could be done to help.
A draft report on Person-Centered Planning has been released nationwide. It is open for public comment until December 2, 2019. The report seeks to define person-centered planning and describe ways to strengthen person-centered planning for individuals who use long-term supports and services.
The federal Department of Health and Human Services (HHS) is working with partners, self-advocates, caregivers and providers to build a stronger long-term supports and system in the United States that works better for everyone. The goal is for people with disabilities and older adults to have more choice, control and access to quality services that support independence, good health, and quality of life.
National Quality Forum (NQF) put together a multi-stakeholder committee to draft this report. The committee is made up of individuals with lived experience with disabilities, family members, and professionals who have extensive experience with person centered planning.
NQF PCP Draft Interim Report pcpp_interim_draft_report_for_comment (1).pdf, 287KB ∞