Show Notes:
From quiet questions to Capitol Hill calls: Discover how any voice can ignite disability advocacy.

In this episode of the Water Prairie Chronicles, host Tonya Wollum welcomes back Ally Pack-Adair, a passionate advocate and ambassador for the Muscular Dystrophy Association (MDA). Following their previous conversation about Cortical Visual Impairment (CVI), Ally shares her personal journey as an MDA ambassador, offering a firsthand look at what it means to be a voice for the neuromuscular disease community.

Ally details the various responsibilities of an MDA ambassador, from raising awareness and fundraising through campaigns like the Shamrocks Campaign and Fill the Boot, to engaging in crucial policy advocacy, including the fight for accessible air travel. She recounts her experiences speaking with legislative assistants and participating in virtual Capitol Hill Advocacy Days, highlighting the importance of collective action in creating meaningful change.

Crucially for parents of children with disabilities, Ally provides invaluable and actionable advice on how to encourage their children to become self-advocates. She offers practical tips, starting with small steps like answering questions at doctor’s appointments and progressing to researching policies and writing to representatives. Ally emphasizes the power of grassroots advocacy and encourages parents to support their children in finding their own voices.

This episode is a must-listen for parents seeking to understand the impact of disability advocacy and how to empower their children to become effective self-advocates. Ally’s insights and experiences offer both inspiration and practical guidance for navigating the world and creating a more inclusive future.

Connect with Ally:

• 👉Instagram: @advocatingwithally

Resources Mentioned in This Episode:

• Muscular Dystrophy Association Website
• The ARC Website
• Easter Seals Website

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Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

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Episode #123: Can Your Child Become a STRONG SELF-ADVOCATE by Age 10?

From quiet questions to Capitol Hill calls: Discover how any voice can ignite disability advocacy.

(Recorded January 27, 2025)

Full Transcript of Interview:

Tonya: Do you think your child is ready to advocate for themself? Will they ever be able to have a loud enough voice to make real changes for people with disabilities?

Today’s guest is the perfect example of what an advocate can be, and she’s here to supply you with a list of tips on how you can help your child become the advocate they need to be.

Welcome to the Water Prairie Chronicles, a podcast for parents of children who have disabilities. I’m your host, Tonya Wollum, and I’m glad you’re here.

You might remember Ally Pack-Adair from our last episode, where she openly shared her experience with cortical visual impairment, or CVI.

If you missed that powerful conversation and want to understand more about how CVI affects individuals, I encourage you to go back and listen to that part of our discussion.

Today, Ally returns to Water Prairie. Not to talk about CVI, but to share about her vital role and experiences as an ambassador for the Muscular Dystrophy Association.

Ally, welcome back to Water Prairie.

Ally: Thank you.

Today’s topic we’re talking about the your role as an MDA ambassador. But before we get into that, the first question I have to ask you is, do you have muscular dystrophy?

I have a mitochondrial disease, which is considered a neuromuscular disease, and neuromuscular diseases fall under the umbrella of muscular dystrophy.

Which means that they are covered by the Muscular Dystrophy Association.

We’re gonna have Ally come back again because I want, I wanna talk a little bit more about this because it does affect life in in general as far as how you navigate everything. But today I wanna talk more about your role as an MDA ambassador.

How did you become an MDA ambassador?

I’m an ambassador for the Muscular Dystrophy Association, also known as the MDA. I was an ambassador for them in 2024, and again this year. I am an ambassador for them in Arizona. They had applications available on their website, and I filled one out and had my interview and was accepted.

It was just a long Google Forms with lots of questions and some essay questions and references, and then an interview.

Congratulations on being chosen a second time for this. This is, this is big.

Thank you.

You’ve already done this before for a year, so you know more than someone who’s new to it. What does it mean to be an ambassador?

In simple terms, an ambassador is a poster child. An ambassador is also a self-advocate, an advocate for others, someone that spreads awareness, spreads the mission of the MDA. Helps with fundraising and the initiatives.

How has your experience, your personal experience with disability shaped how you advocate for others?

I think it’s taught me to be more open about other people’s experiences. No one’s experiences as a disabled person is completely the same. And when we’re advocating for other people, we have to take intersectionality into account too. And I’ve tried to take that into account. When advocating for certain policies.

You mentioned with certain policies, what are some of the policies that you’ve tried to advocate for?

Last year one of the biggest policies with the MDA was accessible air travel. With airplanes, wheelchairs get broken every day, um, and the treatment of disabled passengers isn’t the best. Um, that’s not saying a lot, but the MDA and multiple other nonprofits and individuals really advocated last year for accessible air travel.

The first big part of accessible air travel was actually passed on Rare Disease Day last year, and that was a huge accomplishment. I was very proud of being a small part of that. I was only a small part of that last year, but it still felt very exciting.

And was that Delta that came out with the first chair?

So Delta came out with systems in their airplanes to allow wheelchair users to be able to stay in their wheelchairs on board. But other airlines and the TSA are currently working on training policies for handling wheelchairs and disabled passengers. And there are other initiatives and works right now.

I’ve seen some of the campaigns of both advocating for the change and the reason we need it, but also some of the, the postings now of the training that the TSA is going through. And I was thrilled when I saw that starting up. So thank you for your part in that too. It’s it. It is huge and it will go on indefinitely into the future for everyone who comes after you too.

In September, there was the Virtual Capitol Hill advocacy days, and so I spoke to legislative assistants of a couple representatives and senators in my state over Zoom. To advocate for a couple bills and acts that impact the neuromuscular disease and rare disease communities to try to move them through the House and Senate, and that was a very cool and moving experience to be part of something bigger as a constituent.

I had never had such a big experience before, even though I was only able to do it virtually. I liked seeing such a big community come together. It wasn’t just the MDA participating in this, it was child to cancer organizations, epilepsy organizations, and so many more.

It’s always exciting when you can get together with others too and, and then to, to begin to see the changes that are happening.

For our parents that are listening, what’s the best, um, advice you can give them on how they can encourage their children to become advocates?

If you want your children to become self advocates, it just starts with slowly speaking up for yourself, whether that’s at school or doctor’s appointments. Or even just out in public at grocery stores.

If your child is visibly disabled or even has an invisible disability, people are likely going to ask questions. And self-advocacy goes a long way to feel empowered when answering these questions. At doctor’s appointments, starting slow is a way to become a self-advocate. Starting to answer even just one question by yourself instead of the parents doing the entire appointment.

Even if this means just saying your name and birth date, and then slowly working up to answering your pain level, and then. The rest of the questions the Dr. May ask you, practicing social skills for scripting phone calls is a great way to start to become a self-advocate researching policies before you jump into it.

That’s a way that I did it before I even became an ambassador. Writing letters to your senators too. You can do that without having an official ambassador role. You can always write letters and if you’re on social media, this doesn’t just apply to children. If you’re on social media, repost things from advocates and nonprofits and parents, you can write those letters too.

There’s a way to help out our communities and get things done. Grassroot advocacy. Is a thing and so is community advocacy.

Some great points there. I wanna go back to the one, um, one of the first ones that you mentioned were, um, the example of if you’re in the doctor’s office and letting your child answer one question.

Maybe a lot of times, especially when children are younger. Um, but actually it can happen even in high school and beyond. The doctor or professional will speak to the parent over the child’s head and not talk to the child where the child is the one who really needs to be able to answer it. Would you recommend that a parent repeat the question to their child and let the child answer on their own behalf?

It’s up to you. Honestly. There are multiple ways you can approach this. You can do that. That can shock the doctor, and sometimes that’s the best way to do it, depending on the doctor’s attitude. A lot of doctors have a high ego. I’ve found out as I’ve gotten older, especially if your child is older and the doctors still continuing that when they were a teenager.

And your child is fully capable of answering on their own. If you have a young child and you think they’re ready to start answering questions on their own and becoming their own advocate, you can also talk through how a doctor’s appointment can go while you’re at home. That same scripting and playing, telling them that when a doctor asks a question to you, the parent.

That the child will answer and you can script it out at home, but there are so many ways to go about this and it’s really up to the parents.

Good advice. I like that. All right, so for our a day in the life segment for this episode, I have a couple of questions for you. As an ambassador, can you describe some of your key responsibilities and how you fulfill them?

We have monthly ambassador meetings that are absolutely not mandatory, just encouraged. We introduce ourselves at the beginning of every meeting to meet ambassadors from across the United States and um, the two national ambassadors because not everyone shows up to every meeting and we answer fun icebreaker questions.

Not your tacky ones. Play games, get to know each other and have fun and get any updates about things that are going on. There’s advocacy meetings there. Um, MDA advocacy Office hours we can attend every month to ask questions, tell them the things we need and get policy updates. And then there’s multiple campaigns throughout the year that we can participate in.

One of our biggest campaigns takes place in the spring around St. Patrick’s Day. It’s usually February through April, I believe. I could be wrong about these dates. It’s different depending on what state you’re in, and it’s called the Shamrocks campaign. You may have seen these depending on where you are.

It’s paper shamrocks, typically at grocery stores, restaurant banks, and you can pay usually a dollar or $5 and write your name on the shamrocks. And they’ll be, the money will be donated to the MDA and they’ll hang up on the wall of these establishments. But as an ambassador, we can participate in the campaigns by calling individuals and asking them to donate or calling the establishment and making sure they have everything they need, or even writing thank you letters to the businesses and stuff, and dropping them off.

I participated in that one last year by making a poster and dropping it off to my local KFC. We have the Muscle Walk, which is our, um, annual fundraiser, walk in a couple different states. That one’s super fun. Ambassadors can volunteer there and spread awareness, talk to families. Handout items, just volunteer wherever they’re needed.

I also did that one last year. It was in February. We have Fill the Boot. You may have heard of that one. It’s a very popular campaign. The MDA turned 75 years old this year, and so fill the boot is. Very old. It’s firefighters often standing on corners, but also at events and they will hold out their boots and you can donate money to the MDA.

And I wrote thank you letters for that one last year as well. Those are typically our main responsibilities. Sometimes we get other opportunities as well. Last year I was able to speak on a panel in June for, um, like a young adult advisory committee sort of deal and to pharmaceutical representatives.

You have things to do besides just your own training. And um, and I appreciate you coming on the podcast and sharing with us too because more of our listeners are able to hear more of what’s going on.

Sometimes we get the opportunity to write blog posts or write for the MDAs magazine, which is called the Quest Magazine.

I had the opportunity to write a blog post for them on mental health in December last year.

So you’re getting some great experience.

Yes, and I’ve contributed to their, um, media product guide about accessible products, um, two times. And so I’ve had some really fun opportunities. I’m looking forward to anything I’m able to do for them this year.

If a young person that’s listening to this would like to become an advocate. What would you recommend to them?

There’s a couple ways to become an advocate. You can do it on your own without a nonprofit. I’ve done that before. You can start a social media page. I have an. Advocacy focus social media page, which is always an option.

You can do grassroots advocacy by starting your own advocacy campaign. The MDA has a guide to grassroots advocacy, and it’s not quite neuromuscular disease specific. So if you don’t have intermuscular disease, you can use that guide. And get some ideas from it. Like I mentioned earlier, you can write letters to senators and get involved that way.

That is a great way to get involved, getting your opinion out there, letting them know what you need. You can get involved with nonprofits specific too. Any disease or condition you may have or any disease or condition that you are close to, anything that really calls to you. There’s so many resources out there nationwide.

Some other organizations I recommend are the ARC and Easter Seals. Those are really the two big ones that I’ve been involved with, with advocacy before. I’d say really just get yourself out there and do some research before you jump into something though. Make sure you’re doing something out of your own heart and make sure that you’re doing something with an ethical nonprofit.

If you’re going with someone.

Great advice there. Um, we’ll put the links to the ARC and Easter Seals for their national offices and the, the footnotes here too. And then let’s also link the different fundraisers with MDA so that as people are listening to this at different times of the year, they can, they can get.

In touch with their, their local one, or at least the national organization who can, can get them connected with whoever’s closest to them. Um, before we go, what’s the best way to contact you? If anyone has a question for you,

you can contact me on my Instagram @advocatingwithally, and if you have any MDA specific questions.

You can go to the Muscular Dystrophy Association website and contact anyone on that website.

Well, Ally, thanks. Thanks for being back with us this week. I’m looking forward to talking to you again ne next week. But thank, thank you for joining us today.

Thank you.

I don’t know about you, but I learned a lot from Ally about what it means to be an MDA ambassador. If you found her insights valuable, be sure to click here to subscribe to our channel so you don’t miss future episodes. Be sure to join us again next week when Ally returns once more to discuss the realities of navigating life with multiple disabilities.

Thanks for listening, and I’ll see you next time.