We continue to share posts from parents and guardians like you. Reach out if you have a story to tell! Today’s blog is from a parent who wants to encourage other parents, and other disabled people, to connect with your community. They share about the transformative power of events like our upcoming AdvoCon2023 and other conferences and gatherings where you can discover other people who truly ‘get’ you and your experience.
EMPOWERED BY COMMUNITY
I know what it feels like to be in a room with 100 people and feel utterly alone.
I also know what it feels like to meet a complete stranger who has the same disability as me and make a heartfelt connection in an instant. To feel completely seen and heard. To heal.
One of the impacts that disability can have on someone’s life is isolation. Ableism ensures and enforces it daily. I was taught by society I needed to overcome my disability and be like everyone else in order to be accepted, to belong, to connect with people. When the overcoming part couldn’t happen no matter how hard I tried, and I did try with all my might…all that internal ableism that was already embedded into me, solidified as self-hatred. I needed to find people who understood what I was experiencing. I didn’t have any adult role models. I didn’t know how else to continue. I tried and failed at everything else the professionals were telling me.
Everything that I was taught, that was so horrible about my disability and therefore myself since I was very little, I naturally believed. I then believed those horrible things about all the other people who had the same disability as me. I didn’t want to meet them. I didn’t want to be associated with them. I wanted to escape the label, hoping that therapy would work. I wanted to run as far away from all of them as possible. But, then I hit rock bottom. I was desperate. I had to face what I have been avoiding and fearing my whole life.
Meeting my community has fundamentally changed my life. They are why I am still here. Period. I love them all. I have accepted and embraced all of the beautifulness, the pain, the adversity, the hope, the persistence and love that we all embody and I have swallowed all of it whole. Seeing my own disability reflected in front of me is no longer painful or embarrassing, but healing and beautiful.
The first time I met someone just like me, I went home and cried for hours. Woke up the next day and felt like I lost 10 pounds of emotional weight. I woke up to a new life. Acceptance is life altering. The resistance melts away, and what is left, is just truth.
When I met and embraced my community for all that it was, and wasn’t yet, I embraced advocacy.
I see many people struggle with the concept of advocacy being a lifelong way of being. As parents, we struggle with the acceptance piece that advocacy is not temporary. Please let it just be something wrong with this particular person or situation! But it’s not individual. It’s systemic. In the lifetime of our children, it will be the next issue, the next issue, and then the next issue. It’s never going to end. As their needs develop, so will our advocacy, but advocating is a long-term skill that evolves and grows and becomes a part of our way of interacting with people, not just a short-term temporary problem.
I have evolved as an advocate. It’s amazing to me, how much of my own emotions are connected to how I express myself as an advocate. Fear, unresolved trauma, desperation, loss of control, anger, but also empowerment, self-expression, care, creativity, connection, forgiveness, and belonging.
I am the advocate I am today because of the connections I have made in the disability community. I have invested myself into those relationships and given back everything I have received over decades.
It takes facing the fear and reaching out. Attend a support group. Attend a conference. Because you can be in a room with 100 people and feel utterly alone. Or, you can take a risk and make a heartfelt connection, risk vulnerability, and communicate the words to another person that you have never said before, “me too”.
