February 12

Rhinestones and Tears – My Call to Disability Advocacy 

Have you ever attended Special Olympics, a disability resource fair, or maybe a softball game and been surprised to find yourself in tears?  I don’t mean when someone gets injured or suffers a disappointing finish – those tears are easily explained. The origin is a little less clear for the tears I’m talking about.

I once attended a soccer match in which my niece was a star player, in her element and having a stellar game. Her mom was cheering her on wildly as always, but I was blubbering like a baby. I was perplexed but could neither stop nor pinpoint the source of the tears.

I had a similar moment years ago when Dolly Parton passed by in her annual parade opening Dollywood for the season. Back then, I was mortified by my tearful response, and words fail to describe my husband’s alarm at my tear-filled reaction. He hadn’t always shared my conviction that “doing my work” in therapy was the best investment of family resources, but all comments on therapy bills ceased immediately. 

Well, the tears poured again recently at a special needs softball game and yet again during a noisy lunch at Disability Day on the Hill in Nashville. 

At the game, teams of players, diverse in abilities and skills, alternated cheers and groans. They exulted with hands in the air and expressed disappointment by shaking heads and stomping their feet. And as usual, our team geared up their trash-talking. They loudly announced plans to outdo each other, “show ‘em who’s boss,” “knock it out of the park,” and finally, “get ‘em next time.” Here my tears crept up again.

My years of therapy have not been in vain, though. Well past any embarrassment at emotion taking me by surprise, I was able to get curious. Why did those same unstoppable tears come up when our team started egging on the opposition? Why did it feel just like seeing Dolly pass by that spring day long ago, rhinestones sparkling in the sun? What could these events possibly have in common? 

Luckily, I had nine innings to ponder these questions, and here’s what I figured out:  

The team felt they belonged. They belonged on this field, and they belonged to each other. They belonged to the Sertoma Center, a nonprofit providing services for adults with intellectual and developmental disabilities, and the Sertoma Center and its team belonged to them. They belonged to the wider community that is the Knoxville Parks and Recreation Dynamic Softball League, and that wider community – maybe the whole city – belonged to them. 

And the staff and parents watching – we belonged to them too. And the gift of belonging to them was a big part of what I was born to be. Serving them and their community is a vital part of what I was born to do. Just like my niece on that soccer pitch – talented, trained, hard-working, determined – doing what she was born to do and doing it with all her heart. 

Something similar stirred my tears at Disability Day on the Hill. We were focused on two things: increasing pay for direct service providers (“DSPs”) and defeating a bill that would have allowed harsh physical restraints by lightly trained staff on students with special needs. Low DSP pay has meant continual staff shortages and curtailed services. The proposed restraints were not only prohibited on neurotypical students but also refused as ineffective by the most highly trained crisis intervention specialists.

While advocating for these changes, some lawmakers kept us waiting for scheduled appointments – and it is no small matter to throw my son with autism off his schedule. Some politicians had not fully committed to our requests, but they had all ultimately listened and engaged with our son – always respectfully, but often even joyfully!

We ultimately got what we asked for on both counts, but we didn’t know that when scores of people impacted by disabilities gathered for lunch that day. Challenges abounded, and the chaos and fear levels were as high as the noise. 

No matter our political perspective, we all feel some brokenness in our society, and the stakes are even higher for people with disabilities and the families who love them. 

But the lump in my throat that day wasn’t from a fear of the outcome or the dry turkey sandwich in our boxed lunches. We were together with our people, doing what we were meant to be doing, and doing it with all our hearts. Just like Dolly – fully and majestically herself, doing what she was born to do and doing it with all her heart, dang near all the dang time. 

When a stringy-haired little girl from the Smoky Mountains started singing at church, no doubt many were impressed. Perhaps she only glimpsed all that was to come as she poured her gifts out into the world, but that glimmer was enough, joined with her absolute resolve, to see her potential realized. 

I’ve come to embrace those moments when my tears arise at some sacred glimpse into human potential. Just like Dolly, we have the potential to become people and a society at our best, doing what we were meant to be doing – listening to each other, learning, and figuring it out together. 

The disability community knows perhaps better than any other how to celebrate the individual while also valuing collective efforts. Given the skin we have in the game, it would not surprise me one bit for our community to lead the way – rhinestones, tears, and all!

As a Personal Family Lawyer firm with a Special Needs Focus, we don’t just focus on a Special Needs Plan for our clients – as crucial as that is. We recognize the gifts that individuals with special needs provide to their families and their communities, and we embrace our shared responsibility to empower those individuals to live their best lives. Sharing that responsibility with our clients is an honor that we don’t take lightly. Sharing it with our society through disability advocacy is yet more sacred ground. 

Take the Next Steps in Your Journey Today

We invite you to join us today in seeing our potential realized - as both individuals and as a society - in the ways best suited to your needs and gifts at this time. 

First, if you love someone with a disability (including yourself) and want to ensure your family’s resources and legal planning are aligned to support that individual in realizing his or her potential, please schedule a complimentary call to learn about our heart-centered Special Needs Planning process. We will gladly put our legal skills and knowledge to work in support of your own commitment and resolve to achieve your family’s goals. 

If you’re ready to start your advocacy journey, I invite you to click this link to support the Home and Community-Based Services (HCBS) Relief Act of 2023. The bill extends funding to address the DSP workforce crisis and move 650,000 people nationwide off of waitlists and into services. Providing this support for employment, community integration, and care for disabled individuals is among the most meaningful choices we make as a society.

And stay tuned right here, to our newsletter, for even more advocacy opportunities. We look forward to seeing you out there - and just in case, we’ll bring the Kleenex!

This article is a service of a Personal Family Lawyer® Firm. We don’t just draft documents; we ensure you make informed and empowered decisions about life and death, for yourself and the people you love. That's why we offer a Special Needs Planning Session, during which you will get more financially organized than you’ve ever been before and make all the best choices for the people you love. You can begin by calling our office today to schedule a Special Needs Planning Session.

The content is sourced from Personal Family Lawyer® for use by Personal Family Lawyer® firms, a source believed to be providing accurate information. This material was created for educational and informational purposes only and is not intended as ERISA, tax, legal, or investment advice. If you are seeking legal advice specific to your needs, such advice services must be obtained on your own separate from this educational material.

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