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Meet Emily. This active young woman loves being busy. Whether it’s she’s rock climbing, water skiing, snow skiing, traveling, or volunteering at her church, she can’t sit still. As an Independent Living Coordinator at an Independent Living Center, she shows her consumers how to use self-determination to be independent. We’re so fortunate to have her as a member of the Network!

What's your story?  Tell us a little bit about yourself.

Emily is 27 years old living with spastic quadruple cerebral palsy. She has a passion for advocating  for the disability community. She shares that her goal is to assist and support individuals with disabilities. “There has been a lot of individuals and a lot of programs that have helped me get to where I am today and I would like to give that support to other individuals with disabilities as well,” she tells us. She never sits still, and she’s always trying new things and going on adventures.

How are you involved with self-determination? Why did you join the SD Network?

Emily works as an Independent Living Coordinator at Independence First in Milwaukee. She explains that showing her consumers that they have self-determination and can be independent is the main part of her job. She joined the Network because she feels that the more connections she can make within the disability community, the better resource she’ll be for someone else.

Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination? 

Emily doesn’t want to give too much away, but she has been looking into making the next step in her career which is going back to school and getting her masters degree.

 What tip or resource would you like to share with people who want to be more self-determined?

Emily explains that as an adult, having self-determination isn’t as scary as it was as a kid. She encourages people to have goals and to start small. “Work on your goals a little every day and ask for help from your support system if you need it,” she says.

What are some of your hobbies?

Emily enjoys being active. She loves waters skiing in the summer and snow skiing in the winter. Recently, she has been trying adaptive rockclimbing and she really likes that too. “Anything to keep active,” she says. She loves to travel (preferably to the beach, and she’s also very involved in my church. 

***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 brief provides background information on Home and Community-Based Services (HCBS) and the work of the Home and Community-Based Services Federal Opportunities Regarding Workforce and Research Data (HCBS FORWARD) workgroup. It summarizes the workgroup’s recommendations to federal and state agencies, non-profit organizations, and research institutions to improve data infrastructure and information on the HCBS workforce. Implementing these recommendations will bolster the data infrastructure needed to answer key questions about the HCBS workforce and drive data-informed policy decisions to improve the quality of and access to HCBS for the millions of Americans who are receiving or need these services. 

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Wearing white after Labor Day. Listening to Christmas music in May. Opening the car windows in the dead of winter. Marrying a person of a different race or different economical status. Dying your hair bright pink. Men having long hair. Women shaving their heads. Older people wearing exotic clothes. What do these things have in common? They are all things considered to be “out of the norm.” As a society, we have developed the idea of how things should be. I’m not going to dive into how the “norm” was created because frankly I don’t know, but when people don’t follow the norm, we, as human beings, judge. We judge because it’s different than what we’re accustomed to. People break the norm in many different ways. Sometimes, it’s out of spite, but oftentimes, it’s due to circumstance or the desire to be different.   Whether it’s race, gender, sexual orientation, disability, or another uncontrollable factor or factors, people who are in one or more minorities often face even more judgment when going against the so-called norm. Although, it has gotten a lot more acceptable for people to break the norm in today’s day in age, there’s still quite a stigma.

“YOLO!” (you only live once). That’s what I texted in my family’s group chat one recent Saturday night. Along with the text, I sent pictures of my new haircut. Anyone who knows me knows that I absolutely love experimenting with my hair. Over the years, I’ve pretty much had everything hair style you can imagine. Long, short, bright blonde, yellow, red, permed, you name it…the reason I love experimenting with my hair so much is because it’s one of the few things on my body that I have almost completely control over. The key word in the last sentence is almost. Since I’m not able to physically style it, I have to rely on others to do it. This can be very frustrating because it’s rare that people do it exactly how it I want it. Generally speaking, short hair tends to be easier, but it also grows out faster. In society, the norm is that females generally have medium to long length hair until they are senior citizens. Of course, many people go against the norm with a variety of hairstyles. My mom and dad pretty are traditional when it comes to hair. They aren’t a fan of anything bold or different. They love long hair on ladies. Over the years, when I’ve done drastic haircuts, they’ve playful teased me like most families do. They aren’t afraid to let me know they don’t like it and that’s fine. While I respect their opinion, it’s ultimately my decision.

Call it a midlife crisis, call it being bold, call it functional, call it whatever you want…this time, I wanted to go very short for my haircut. Whenever I schedule a haircut, one of my favorite things to do is to look for hairstyles online. Again, it goes back to that control piece—it’s something that I can control. I’ve been looking at a certain picture of a hairstyle for awhile and decided this would be the time that I go for it. I almost completely shaved my head and I can’t begin to tell you how much I love it. It was a liberating experience. It’s super easy to take care of and I honestly love the way it looks and feels. As I expected, my parents aren’t fans, but that’s ok. I absolutely love it and that’s what matters!

Being a woman with a physical disability who has her head shaved will bring on its own set of stigmas and that’s okay. I will be mistaken for a male, but I was with my last couple of hairstyles; I’m okay with that. Other wrong assumptions will be made because it’s against the norm and that’s totally understandable. As I explained in a past entry, assumptions are unavoidable-they’re a part of life.

Hairstyles aren’t the only thing that I tend to go against the norm on. I wrote a whole entry about this awhile back, but this issue seems to be becoming more and more front and center as the world transforms its norms. In recent years, it’s become the norm to refer to people with disabilities as “disabled.” While I understand that people with disabilities want to be seen as a community and take pride in having a disability, I just can’t bring myself to use the term. It’s probably really boastful for me to say, but I want to be seen as a person first. I know I’m now in a real slim minority on this, but I’m okay with that. I’ll probably always be against the norm on it, but that’s fine with me.

Having a significant physical disability puts me against so many norms as it is. In most cases, I don’t mind going against the norms. Yes, I know that may sound contradictory to things I’ve said, but I guess I don’t mind being different on my terms. Choosing to be different is different than being part of a minority due to uncontrollable factors of life. I didn’t choose to have a disability, but I can choose my hairstyle. See the difference? I’m choosing to be different by cutting my hair a certain way. That’s my choice.

Society has really transformed its norms over the last 30 years and that’s a great thing. The world has become more inclusive for everyone. Norms are always transforming, and, yet, they’re meant to be broken. It’d be a very boring world if everyone abided by the norms of society.

Will I shave my head again? Much to my parents’ dismay, I probably will. Going against the norm often singles people out. Often, when you go against the norm, it makes you stand out which can be good and bad. When enough people go against the norm on something, overtime, it often creates a new norm.  I want to challenge you to go against the norm on something you believe in or want to do. Be bold. Take a chance. Remember, YOLO!

***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 U.S. Department of Health and Human Services finalized a rule that prohibits discrimination on the basis of disability. This rule, titled Discrimination on the Basis of Disability in Health and Human Service Programs or Activities, advances equity and bolsters protections for people with disabilities under Section 504 of the Rehabilitation Act.

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For Michael Ward of Madison, art has helped him find a purpose in life. Diagnosed with cerebral palsy when he was just five days old, Ward has speech and movement his whole life; however, that didn't deter him from finding his passion.  He started creating coloring books containing universal quotes in hopes of inspiring people with disabilities to preserve through life's challenges. Recently, Ward participated in an art festival.

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U.S. airlines got a little bit better with mobility devices in 2023. The 10 major carriers transported 835,327 wheelchairs and other aids last year, and there were 11,527 reports of damage. This article lists the top 10 best airlines for handling mobility devices.

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As part of the Biden-Harris Administration's Care Workers Recognition Month activities and in support of President Biden's Executive Order on Increasing Access to High-Quality Care and Supporting Caregivers, the U.S. Department of Health and Human Services announced that 20 states have been selected to participate in two separate technical assistance programs that together will help participating states better recruit, train, and retain direct care workers, who provide home and community-based services for older adults and people with disabilities.

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A manufacturing company in West Allis has found a great employee. Eric Gama, who is on the autism spectrum, has found his calling as a machine assistant at Allis Manufacturing. Allis Manufacturing has made a deliberate effort to provide people on the spectrum with meaningful job opportunities.

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