What Makes You Tick | Heroes with Mental and Developmental Disabilities LaunchPod Media

Today Devon talks to special guest Bryony Moss, a 25 year old who lives in the UK and deals with cerebral palsy of right hemiplegia, learning disabilities, and she’s also neurodivergent. She’s an actress, model, and advocate for disability and mental health. Growing up, Bryony realized there seemed to be no actresses out there like her, so she wanted to get into the industry herself and help others like her see and understand that anyone can do it. She has started her own bedtime story reading YouTube channel and has found that you can help people anywhere in the world in various ways.

About cerebral palsy 2:00Adapting to her struggles 4:00Getting to a happy place in life 9:50Bryony Goes Bananas with Bedtime Stories 12:20Inspirational people for her 16:30Motivation and making necessary changes in herself 22:10Feeling bad about having a disability 26:25What Bryony is working on right now 35:10
“Don’t be scared to try new things, even in school settings when you try and fit in. I’d say one of my greatest accomplishments was actually just staying true to myself. Not everyone’s gonna like it, but just stay true to yourself because you are enough and you are worthy, and you can achieve and will do amazing things even though you don’t even know it yet because there are crazy amounts of opportunities that come your way when you just be you.” 11:21

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Today we interview Olivier and Hilda Bernier who share with us some wonderful stories about their experience navigating the world of special education services for their son, Emilio. Olivier is a filmmaker from New York and his wife gave birth to their son 6 years ago, who has Down Syndrome and he set them on this journey of making a film called “Forget Me Not,” which they hope many will get a chance to see. Before having Emilio, Hilda was a special education and bilingual education teacher in Brooklyn, which has given her a lot of insight into all the processes that children with disabilities go through to get the services they need. After having Emilio, they have gained a much better understanding of how the process is for families and want to give their perspective through their documentary.
Did Olivier have experience with Down Syndrome? 3:25The circumstances that led to them creating this documentary 7:05What response are you getting from this project? 16:45What you ought to know going into this 20:40Help is necessary 28:00“For us our goal was and is to have Emilio in an inclusive setting, so once we determined that that was our goal, we were able to work around it, see how we could work with the district, and the teachers, and providers to make it happen. All families and circumstances are different, so it’s very important to have a clear vision of what you want for your child and then you will find a way to get to it.” 24:17

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@forgetmenotdocumentary

In this episode Devon wanted to talk about something that’s really important to him here in Utah. There is a bill being proposed in the House, Bill HB0178, and the main gist of this bill is that it would essentially make it illegal for a disability care agency or contracted company to have as a part of their employment agreements non-compete, non solicitation agreements, and this may seem like something trivial or not important, but there is a reason this could be an important issue for Utahns to pay attention to and Devon explains that today.

Why this matters 2:12Persons who work with a host home 4:48Trying to prevent moral complication 8:28The only way that less of those bad things happen 11:34Our obligation to reduce the capacity for harm 14:05“Because all of the money for this industry are your private funds, but committed to public purposes, public initiatives, then we have zero reason to restrict the capacity, or the quality, or the ability for those funds to impact positive change. I’d be in support of any initiative that reduces the limits on our collective innovative capacity to prove the quality of services.” 10:57

Today Devin had the opportunity to speak with Matthew Schwab, who is a 25 year old North Carolina native that has Down Syndrome. What makes Matthew tick is advocacy in general because everyone needs it, but those who really need it are individuals with disabilities. He is just one voice, but wants to help change the perception of how people view these individuals and their lives. A perception that is prevalent in the professional world is that people with disabilities aren’t very capable, but Matthew is on a mission to change that perception and show that people with disabilities often can do a lot more than what they get credit for.

What perception Matthew’s trying to change 1:00
The new narrative 2:31
Some of his hacks and tips for finding success with Down Syndrome 3:34
Have you ever been jealous or wish you didn’t have Down Syndrome? 8:00
Stereotypes that aren’t reality 10:39
What Matthew has done to develop emotional awareness 13:47
The TED organization 16:41
Public speaking engagements 20:56
Gigi’s Playhouse 29:27

“I want this narrative to be completely different. More accepting, more welcoming, while individuals with disabilities are ready for the world, but it proves that the world is not ready for us. And that’s what I want to do. I want it to be an equal balance between us being ready for the world and the world being ready for us.” 2:32

Today we have Carissa Carroll who is the Founder of Jack’s Basket, a nonprofit organization with a mission to celebrate babies with Down syndrome that strives to ensure that every new and expectant parent is provided resources and avenues of support within the community. Carissa talks about how after her son was born and diagnosed with Down Syndrome, she was surprised to learn that families were not given any information about what Down Syndrome was. She was also heartbroken to hear how families weren’t treated as if this was any other baby. So the purpose and heart behind Jack’s Basket is that every baby deserves to be celebrated and that every person is worthy of respect.

About Jack’s Basket 1:28
Changing the tone when delivering the news 6:02
Being exposed to Down Syndrome 10:05
Skills to develop for Jack’s Basket 17:18
More meaning with Down Syndrome 23:34
There is deep value in this group 29:51

“The world, or how may be giving this news in kind of a sad, kind of assumptive, but negative tone, why is that not the case from people that are actually living their lives with Down Syndrome? Or families that have a family member with Down Syndrome? That also was a reality to me that I was like, that’s not OK. We shouldn’t be talking about Down Syndrome as if it is the most devastating news because we can hear from those that has that reality that life is good.” 6:30

www.jacksbasket.org

Today is a very special episode with the founders of the Abby Lou Foundation, Mr. Jeremy Creager and his lovely wife, Lisa. They have a daughter who was born with Down’s Syndrome and they realized that as she got older, the quality and availability of services available to her as an adult was kind of a bleak picture. It was a little bit frustrating and depressive that the quality of experiences outside of their home that were available to their daughter was lacking, so initially that was the goal, to create a foundation that would advocate and educate our friends with disabilities to let them know that they have the power and ability to shop around and that they deserve high quality products. Tune in with us today to hear about their story and how the Abby Lou Foundation helps to change the lives of many others like their daughter.

What the Abby Lou Foundation is and why it exists 1:06
Does the public know about these resources? 7:19
What parents can do to take control 11:39
Clarifying some basic options for living and medicaid waiver services 13:55
Being able to make informed choices 20:10
Presenting new desserts and giving more options 24:34
Blessed to help these amazing individuals 30:34

“Regardless of what anybody tells you, there’s no limitations to the number of programs you can try. As long as there’s a program out there willing to give you a try, you have the opportunity and if you already have the money for this program assigned to you, then you have the opportunity to try as many cookies, or brownies, or muffins, or any number of desserts out there until you find the one that’s just right for you.” 26:42