In 2016 I had to stop working due to my disability. If you follow my blog, or have read my past posts, you know that I have a very rare metabolic disorder that causes mitochondrial dysfunction and neuromuscular disease. As my disease progressed, I had to stop working. For a little while, it seemed like I had no more purpose in life. I had no profession, I had no answer to the question, “What do you do?”, and I felt as if I had nothing further to provide to society. Then I found the Joseph Maley Foundation.
The Joseph Maley Foundation is an organization that serves children of all abilities. Their mission is to help serve children with disabilities, their siblings, their parents, and their communities. They truly see the purpose in addressing all the potential issues that can arise with living with a disability, or having a loved one with a disability. They serve the entire family, as well as the community. I decided I needed to get involved in society again, so I reached out to Vivian Maley, the co-founder of the Joseph Maley Foundation. She and a few of her staff met with me to discuss their programs, and from then on I was hooked.
The Joseph Maley Foundation provides multiple programs for children and families which are affected by disabilities in some way. They provide a program called Joseph Maley Fitness which provides sports activities for children with disabilities, as well as their siblings. It helps teach children with disabilities how to adapt to play different sports, and it provides a place for their siblings to play with other children besides their siblings. The program is unique in that it not only serves the child with the disability, but it serves all children. Children with and without disabilities can learn to play together and see each other as equals.
They also provide a Family Support Program that serves the parents and families of children with disabilities. It provides each parent with an outlet to talk to other parents with children with disabilities. It allows them to learn from each other, vent frustrations, and provides them with a support network that is needed by so many families with children with disabilities. They also help to provide education to schools if families are struggling with schools understanding their child’s specific needs. They help collaborate “with educators, schools, community organizations, and attorneys” in order to support the family with any need they may have. They provide outreach programs to community organizations to help educate staff members about disabilities. They also provide continuing legal education classes to attorneys about issues specifically related to disabilities to help them to broaden their understanding of the needs of disabled individuals and their families.
The Joseph Maley Foundation also provides a program called the HOPE program which brings “emotional, physical, and mental health awareness and advocacy to students.” This program focuses on mental health needs of children, and they provide multiple services to assist children and families dealing with mental health and emotional issues. “HOPE is aligned to the American School Counseling Association Mindsets & Behaviors for Student Success as well as Indiana Department of Education state standards.” This program assists schools with educating their students on multiple topics such as emotions and feelings, anti-bullying and friendship, service learning, and many other aspects of mental and emotional health of children.
One unique program that Joseph Maley Foundation provides is the Joseph Maley Friends program. This program teaches 8th graders how to become puppeteers for puppet programs put on for younger students in schools. Many of the puppets have a disability of some kind, and the puppet program helps to educate young students how it is possible to befriend someone with a disability, and helps to break down barriers to learning about disabilities. I have personally had the pleasure of speaking to multiple puppeteer groups about my disability experience in order to help them understand better the perspective of someone with a disability. Many of these young puppeteer volunteers have gone on to be interns at the Joseph Maley Foundation.
While I have had the pleasure of volunteering for many of these programs, the program nearest and dearest to my heart is the Disability Awareness program. They educate every grade level from pre-school through 8th grade by bringing Disability Awareness Weeks to schools throughout the Indianapolis area. During these weeks, each grade level is exposed to different disabilities, and they get to learn in a hands on way what it is like to live with a certain disability. During these weeks, they also bring in speakers to speak to different grade levels about different topics regarding living with a disability. I have had the pleasure of speaking to multiple different classes in many schools regarding “seeing the person behind the disability”.
This program is very near to my heart because it gives me a chance to help children understand what it is like to live with a disability, but also that someone with a disability is not something to be feared. I help them to understand that people with disabilities are just like them. We all have dreams and goals for our lives, we all have struggles and barriers to reaching our goals, and we all need companionship and friendship in our lives. Each and every one of us has a disability of some sort. We each have something that we struggle with, and we each have difficulties in our lives. While our difficulties may be different, we are all similar because each and every one of us has something that stands in the way of what we wish to do with our lives. The important thing I always try to instill in the children I speak to is to never judge a book by its cover. We each may have outward differences, but if we try to get to know each other we can find that we have more similarities than differences.
I wrote a prior post about my uncle, who had SMA-II, who wrote a letter prior to his passing stating, “If part of what I’ve learned about living with a disease – an illness – can benefit other people or change the way they look at people with an illness, then it makes what I do worthwhile.” He passed away shortly before I started showing signs of having a disability, but his words and actions taught me how to live graciously and amazingly with a disability. He taught me that regardless of disability, everyone has a purpose. His purpose was teaching others and helping others to understand how to look at disabilities differently; how to understand the person AND the disability, and how people with disabilities can do amazing things and touch so many lives. Neither he nor I knew at the time what wonderful lessons he was teaching me about how to be a person with a disability and make a difference, but I remember everything we did together from when I was 3 years old to 16 when he passed away, and the lessons he taught me will stay with me always. He is the reason I do what I do, and why I have the outlook I have regarding my own disability. He is the reason I have found my new purpose in life. I may no longer be able to work, but I can still make a difference in our society by passing along the wisdom he taught me to other youngsters, just like he taught me when I was young. The younger we can reach individuals, and teach them about disabilities, the easier it is to change the stigma around living with a disability.
This is why the Joseph Maley Foundation is so important to me. They not only treat the individual with a disability, but they treat the entire family and the community. They are doing their part in helping to de-stigmatize disabilities, teach the community about disabilities, and to help families who may be struggling to obtain the help they need to live happier lives regardless of the disability impacting their lives. They truly understand the importance of not only helping the person with a disability, but helping their entire community understand and learn how to better treat those with disabilities and their families. I am forever grateful that the Joseph Maley Foundation took me in as a small part of their family. I will continue to do my best to bring education to as many children and adults as I can for as long as I am able. Thank you, Joseph Maley Foundation! You are truly one of a kind.