Mel Malczewski

Feature: https://youtu.be/KQxQzQEj5h4?si=CmiMcgpmi1nrFvWM

Hi! I’m Mel Malczewski (they/them) and I was born with Ullrich Congenital Muscular Dystrophy. When I heard that the theme for this brunch was going to be building compassion for community, I immediately knew that I wanted to speak and give my perspective — community has felt like an entire area of study for me these past few years, even prior to heading off to college. I even wrote my personal statement for college applications about an overwhelming sense of community that I felt as a young child.

So far, throughout my late adolescent and early adult life I’ve been lucky to find community at nearly every turn — I’ve always had to rely on others for help. Being a part of a community is deeply important to my life, and I’d like it to be a part of my future, as well, where I will hopefully help to instill a sense of community for my future students, as I’ve had instilled in me by my past teachers and mentors.

Beyond that, I’m reminded of the community I’ve helped build through my disability every day at university, as a result of my delightful staff of student care workers who take time out of their days and busy schedules to help take care of me. Furthermore, I’d say that I’ve effectively built a team of people I’m proud to call friends, and even sometimes mentors as well.

TAKEAWAYS: If there are any sentiments I absolutely want you to take away from our discussion, it would most certainly be a compulsion and feeling of urgency to work towards building community in your own lives, in any way possible. Our world is so brutally divided right now — what we truly need is solidarity with our fellow people. One other thought I’d like to leave you with is something I’m sure you’ve heard a million times before — follow the golden rule. Treating others how one would want to be treated is essential towards building this sense of community, as prejudices are, for lack of a better word, dangerous — we don’t need more barriers to entry for getting to know each other, let alone ones we forge ourselves.

 Isabella Weik

Rare story: https://www.instagram.com/reel/DGOC7nzOcI9/?igsh=MWs5b3RoMDgwdm04dg==

Isabella Weik at the age of 8 was diagnosed with a rare autoimmune disorder called Mixed Connective Tissue Disease. From the age of 8-14 Isabella was in and out of hospitals, struggled to walk and used a wheel chair in school, and was taking chemotherapy at Cleveland Clinic. Now at the age of 25 Isabella is the healthiest she’s ever felt and serves as the CEO of Toledo Mindfulness Institute, a yoga studio and wellness provider located in the heart of Downtown Sylvania. As a young professional in the Toledo region she is passionate about talent retention, wellness, and the arts and lives by her motto slow, steady, intentional, grateful. 

TAKEAWAYS: 

What a superpowers having an autoimmune disease have given me 

-gratitude 

-advocacy 

-compassion

Dawn Bentley

Website: https://caireconsulting.com/

Dawn has more than 25 years of experience in the disability services field. She began her career in education as a special education teacher, an early intervention specialist, a developmental therapist and a principal and special education supervisor. She has also served as a director in the nonprofit sector of the disability field. Dawn began her own consulting firm, CAIRE, LLC (Community Access Inclusion Representation and Equity), in 2022.

Dawn attended Miami University and received her Bachelor’s degree in early childhood education, early intervention, and special education. She then received her Master’s degree in Education from Marygrove College. 

Dawn’s company, CAIRE, LLC focuses on consulting with community businesses and organizations on disability access. Dawn is a certified ADA coordinator and provides accessibility audits as well as customized training opportunities.

Dawn’s company, CAIRE, LLC is a recipient of the 2023 Toledo Community Votes award for best Community Organization. In 2023, Dawn published a coloring book called The Inclusion Conclusion: How to Discuss Disabilities. It has been distributed across 13 states.

Dawn is a member of the Lott-Conlon Foundation board and a founding member of the ALLiance of Northwest Ohio. 

TAKEAWAYS:

1. Rare disease does not mean the impact is small or insignificant.

2. Rare disease and disability often go hand in hand, and awareness is the key to access.