Iowa Advocacy Connection | 2020, Issue 4

Issue 28, 12/21/2020

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Articles in This Issue:


Chasing Happiness: Guest Article from Community Living Ambassador Michael Gillette

 

Let’s talk about being disabled. I wasn’t born with a disability. I gained that in my early 20s, and since then it’s been a rocky path. I suffered a traumatic brain injury, meaning I had to learn how to walk again, basically starting life over. Luckily, disabled isn’t dead, and things being a bit more difficult isn’t the end of the world. My disability led me to work on the Community Living Ambassador program. Sharing my success story and advocating for those in my community has given me a new lease on life. Being disabled isn’t something you can run away from. The only option is to face it head on. I knew from the start that I would walk again and live a regular life. I chose to prove what I could do. My biggest complaint is people judge me. They see I’m disabled and don’t treat me like an adult or realize that mentally I’m still the same cocky bartender at heart.

 

Learning to lighten up: Making fun of myself and joking about my situation is one of the ways I cope. Take my advice and lighten up. Laughing at yourself can take power away from what ails you. I don’t expect help from anyone and prefer to do things on my own. I know that if I can simply do it myself once, I can practice it over and over until it starts to be easier — whether that’s bathing or dressing myself. Maybe I just don’t like people seeing me naked, but my can-do attitude applies to most things. Success is an addiction. It feels good to beat the odds. I wasn’t expected to do the things I have done so saying, “Ha ha, I did it anyway!” feels good.

 

Overcoming physical and mental challenges: I’ve had days where getting out of bed was hard. I give myself a day to be lazy, but only if I do all my chores and get exercise the next day. Complacency is the rival of progress. You won’t get better without hard work. It’s not always fun but it is necessary. Caring for your mind and body requires time to relax and recover. Having a strong body doesn’t mean much if it’s occupied by a weak mind. Find simple things you enjoy. I watch science and history videos to keep active mentally. Also important is being involved in my community and talking with friends or family. I message someone every day to check in and make plans.

 

Weathering the ups and downs: Having a bad day? Try again tomorrow. Life’s a series of ups and downs, no matter if you are disabled or not. Robert Frost had it right when he said, “In three words, I can sum up everything I’ve learned about life. It goes on.” Moving forward is one of the things you can control. Become the hero of your story. It won’t be easy, but it will be worth it. Falling is easy. Getting back up, that’s the hard part. There are many programs and institutions designed to help disabled people. Seeing their importance and knowing how they assisted me led me to get involved.

 

There’s no shame in receiving the help they offer. When voting, assistance with the process was useful. That’s not begging for help; that’s seeing a complicated process and using the help to complete my goal. Learning how to accept help has made me successful. Knowing everything will work out: If I could have known one thing when I began my recovery, it’s that everything will work out. Dwelling on the past wastes time. The present and the future are all that matter. Being angry about being disabled is natural, but you can harness that anger and turn it into resolve. Resolve to beat the odds, to be a success story. Nothing motivates like anger or love. I’m deeply angry at the disability, but I love showing people it doesn’t define me. Since the beginning of my journey, I’ve become a very vocal advocate, not only for myself but for disabled people across the spectrum. Too often we are overlooked or treated as less than, and I aim to shape the world to be all inclusive. This isn’t about me; this is about us.

 

Chasing happiness: Being a Community Living Ambassador has given me a platform to show the world that it can be a better place for all people regardless of their status as disabled or “normal.” We’re all just chasing happiness. I’ve gotten mine from helping others with their recovery. Others did such things for me. I’m just paying it forward. Visit this link to watch Michael share his story: https://youtu.be/SyMKPSLjkPE.

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National Disability Employment Awareness Month Virtual Event

In honor of National Disability Employment Awareness Month, the Iowa Developmental Disabilities Council and Iowa Vocational Rehabilitation Services facilitated a virtual webinar event called “Increasing Access and Opportunity: NDEAM” via Zoom on November 10, 2020. We were joined by the individuals we showcased all month long through videoed interviews for an interactive discussion on their lives, successes and various roles they’ve played in the workforce as individuals with disabilities. As we wrap up National Disability Employment Awareness Month, the Iowa Developmental Disabilities Council and Iowa Vocational Rehabilitation Services are still celebrating the various individuals with disabilities and their roles in the workforce. The purpose of National Disability Employment Awareness Month is to educate about disability employment issues and celebrate the many and varied contributions of America’s workers with disabilities. Join us in celebrating the individuals highlighted throughout our campaign.

We encourage you to watch this video and hear their stories: https://youtu.be/Fp1qnXKIKFE.

 

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Amber Gale: Iowa DD Council Member Spotlight

My four-year-old son, AJ, does the best Cookie Monster impersonations and just happens to have Down syndrome. He was also born with a congenital heart defect, hypoplastic left heart syndrome, and has other medical diagnoses, including trach, g-tube and oxygen dependency. This past year, he has become more medically stable, and I’ve been able to use the opportunity to become more involved in advocating — not only for him but for others in our community. I participated in Iowa Family Leadership Training Institute, where I learned about the DD council. It seemed like a great opportunity to amplify the needs of the community. The opportunity to be a part of the Iowa DD Council and spend time with other individuals in advocacy is exciting. Learning and growing as a person is important to me and something that has made a huge difference in my parenting journey, especially with AJ. This led to working with others to found MORE for Caregivers (www.moreforcaregivers.org), a nonprofit that provides personal development opportunities for parents and caregivers of children with special health care needs in Iowa. That takes up a good chunk of my time, but I’m also crafty. I love creative projects and bullet journaling. I also love to write and create resources to share with other families on our family blog at www.aaronandambersfamily.org. My family loves to go camping and spend time outdoors, but that was definitely something that was passed down on their dad’s side and skipped a generation on my side — I’d rather sit inside and relax while they go outside! I am pretty much an open book, especially when it comes to our journey with AJ and love connecting with other families. I am also thankful and looking forward to the opportunity to serve on the Council.

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Brady Werger: Community Living Ambassador Feature

“Hi, my name is Brady Werger. I am 28 years old and live in a waiver home in Glenwood, IA. I came to live at the Glenwood Resource Center, an intermediate care facility, in 2011. Before my move to Glenwood, I lived in a brain injury facility in Carbondale, Illinois. At the age of four, I struggled with explosive anger outbursts, which caused me to display dangerous behaviors. I would hurt myself and others. When I arrived at the Glenwood Resource Center, my team of staff jumped right in and addressed my issues. They then helped me to set goals to work on and to not show the behaviors I was displaying prior to moving to Glenwood. After working on my barriers with my therapist, I noticed that my negative behaviors were improving. After years of focusing on my goals, I was able to work with my team of staff at the Glenwood Resource Center to make the next step in my life, which was to move into the community in a waiver home where I reside now.”

Visit this link to watch all of Brady’s story: https://youtu.be/_29-J1-7EI8. Community Living Ambassadors: A project of Iowa’s UCEDD funded by the Iowa DD Counncil.

 

 

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COVID Recovery Iowa

Do you have feelings of anxiety, loneliness, frustration or loss? COVID Recovery Iowa can help. We are here to listen and offer support to people with disabilities. Access FREE, confidential counseling through a one-time meeting or ongoing basis; social support through phone, text, email or Zoom; education and resources about COVID; and online group activities/events to increase social interactions. Contact us! Call 844-902-3770, text CHATBUDDY to 8511 or email COVIDRecoveryIowa@iowacompass.org. You can visit our website at uihc.org/covid-recovery-iowa.

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Make Your Mark! 2020 Virtual Conference Recap

Thank you for joining us for the Make Your Mark! 2020 Virtual Conference brought to you via Zoom webinar. Sessions this year focused on developing your vision for the future. We were excited to offer FREE registration to individuals with disabilities, family members and direct care support professionals accompanying participants. We had just over 170 people register this year! Our featured keynote speaker was Kayla McKeon from the National Down Syndrome Society. Kayla presented on her journey toward becoming the first registered lobbyist with Down syndrome and the barriers broken to achieve her goals and ambitions. Thank you to our 2020 exhibitors: Amerigroup Iowa, Inc., Talk To Me Technologies, Inc., and Relay Iowa & Telecommunications Iowa. Without you this event would not be possible. Visit our YouTube channel to watch the recorded sessions: https://www.youtube.com/user/idactionia/videos.

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Legislative Town Hall Meetings

The Iowa DD Council wants to hold a virtual townhall meeting in your area! This legislative session, we will look to host and participate in virtual townhall meetings across the state to discuss your key advocacy topics and share our legislative priorities with your local legislators. We would like to partner with you to reach out to your legislator, provide an opportunity to connect with local DD Council members, and help us identify new or existing areas of advocacy. More details will be coming soon! Email us at contactus@idaction.org for additional information. 

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