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A hug from your child. A text message from your teenage son saying “I love you, mom.” Going to your daughter’s soccer game. Taking your kids to Disneyland. Having your little one run to you when you pick them up from school or daycare. Watching your child giggle at something funny. What do all of these things have in common? These are events that commonly bring adults my age joy. Most parents don’t even realize how often they get that little jolt of joy, but it usually happens multiple times a day. Kids have a way of bringing a little joy into the world even on your worst days. What happens when people aren’t able to have kids? At times, it’s not easy to do, but speaking for myself, I try to live vicariously through my sister and friends who have kids. For people with significant physical limitations, interacting with small kids is always a little bit of a gamble.

“Stacy,” with emphasis on the C ("Stay Ceeeee"), my almost two-year-old nephew squealed over FaceTime while his four-year-old brother anxiously waited to show me the school bus he had just drawn. With that five-minute FaceTime call, no matter how bad my day had been, it was made! A few years ago—I guess about four years ago now—I wrote about the yearning to be a mother. My sister had just had her first baby and I had become an aunt. I didn’t know how my nephew would interact with me. I didn’t know what to expect. Would he be scared of me? Not being able to talk or physically take care of him like many aunties do, how could I form a relationship with him? What would that look like? Questions like these swirled in my head.

Four years later and another little adorable nephew (if I do say so myself) added to the mix, I can tell you that those two little boys are the apples of my eye. Being an aunt is awesome. Like with some of my friends’ kids, since they never knew any different, my nephews just know me as Aunt Stacy. Do they realize I’m a little different than most people? Of course they do. Honestly, I think they realized something was different about me when they were just a few months old, but they’re still too young to articulate the questions.

My four-year-old nephew may be starting to ask questions about me to my sister and brother-in-law, but, so far, in front of me, he hasn’t really asked about why I’m different. I know he will and I want him to ask all the questions he has. Of course, the depth of our answers will depend on his age. For a couple years, telling him that I was born this way will be sufficient for him. When he gets older, we’ll introduce the term cerebral palsy and explain what it is. Will we ever share my birth story with him? Probably eventually way down the road, but we’ll wait until he asks.

Are my nephews afraid of me? That’s a difficult question to answer. When it’s been a while since they’ve seen me in-person, when they initially see me, they often step back and shy away. While I understand that they’re just not used to seeing someone with a significant physical disability, admittedly, it stings a little. Usually, with some prompting and coaxing from other adults, the boys warm up pretty fast and I can get a fist bump or a high five. If I’m around them long enough, I sometimes can even get a hug! It just depends on the scenario. I know this will get better with age and they’ll be less and less timid.

While I may not be able to do traditional things aunts do like babysit or take them on fun adventures, I continue to find ways to interact with my nephews. Whether it’d be giving them rides on back of my wheelchair, having them help open my birthday gifts, or giving them high fives, I cherish every little interaction I have with the boys because not only does it fill my heart with joy, I also know it helps them understand who I am. Right now, they are at the age where ramps are pretty cool, so they love it when I come visit because my sister and brother-in-law set up a portable ramp so I can get in the house with my power chair, and the kids love riding their bikes up and down the ramps.  They also enjoy running up and down the ramp in our van. Things like this are unique to having an aunt who has physical limitations.

Will my nephews be accepting to people with disabilities because they have me in their lives? I can’t say for sure, but I hope so. Will my relationship with the kids be different from the typical aunt? Yes, but know what? That’s okay. I know the exorbitant amount of joy they bring to my life; I only hope that I can bring a jolt of joy to theirs!

***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. House of Representatives has taken a crucial step forward in supporting the autism community by passing the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2024. Over the past two decades, the Autism CARES Act has been a beacon of progress, fundamentally transforming our understanding of autism and reshaping the landscape of support for individuals on the spectrum.

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In August, the Access Board, held public hearings on artificial intelligence (AI) with members of the disability community and others. This series stems from the Board’s Memorandum of Understanding with the American Association of People with Disabilities (AAPD) and the Center for Democracy & Technology (CDT).

The hearings supported the Access Board’s work in fulfilling the executive order on the use of artificial intelligence to engage with disability community members and AI practitioners to learn about the risks and benefits of AI, and to issue recommendations and technical assistance to promote equity, accessibility, and inclusion for all.

In addition to those hearings, the Access Board is accepting written comments of 300 words or less until October 31.

The General Services Administration (GSA) recently published a final rule adopting the public right-of-way accessibility guidelines issued by the Access Board. Under the rule, which went into effect on September 3, GSA’s federal new construction, alteration, and renovation projects will have to comply with the Access Board’s guidelines.

For new and modified facilities this will mean ensuring accessibility, including by addressing:

• Travel distances from on-street parking to building entrances, making it easier to access government buildings while increasing efficiency for everyone who uses street parking.
• Sidewalk sizes and widths, making it easier for people to pass on the sidewalk, reducing accidental collisions, and better accommodating mobility aids such as walkers, rollators, and both manual and electric wheelchairs.
• Ground slope at passenger loading zones to prevent them from being too steep for people with mobility disabilities to climb.
• Audio and tactile warning systems, including audio signal warnings, truncated domes, and detectable warning pavers, to increase safety by alerting pedestrians to an imminent street crossing and to when they have the right-of-way to cross the street.

Two months ago, many voters with disabilities in Wisconsin were looking forward to being able to receive and mark a ballot electronically. However, an appeals court disrupted the plan. Now, advocates are continuing their battle in the Wisconsin Supreme Court. As it takes longer and longer, it appears highly unlikely that voters with disabilities will have access to electronic ballots for the November election.

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States are regularly required to evaluate the eligibility of Medicaid beneficiaries. For people with developmental disabilities, the outcome of this process can affect not only their medical coverage, but also their access to community living supports. With new guidance, federal officials are outlining steps that states should take to ensure that people with disabilities are not inadvertently dropped from Medicaid home and community-based services.

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HUD published on August 27th updated guidance for its Mainstream Voucher program that creates new alternative requirements and waivers to enable public housing agencies (PHAs) to better utilize Mainstream Vouchers, helping people with disabilities transition from – or avoid altogether – institutional settings and instead to live in community.

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