SMA Month: Pride and Awareness

It’s Spinal Muscular Atrophy Awareness Month! Or as some are dubbing it, SMA Pride Month! The two titles show the two sides to the SMA community; the adults living with SMA, and the parents of children with SMA. Most of the time, we all get along in our social media groups and at events. But this month the conversation changed because some people in the community want to celebrate their identity as a person with SMA, while others argue there is absolutely nothing about SMA to celebrate. SMA is either what makes someone special and unique, or it is the cause of someone else’s suffering and death-period.

I’m sharing a look inside a very specific community because it illustrates a larger issue at play today between disabled adults and the parents of disabled children and how the views of each are affected by, and affect society at large. But for me, the conversation is often lacking one critical component: Christ and his Church. Without a view of the human person enlightened by faith, no one can really hope to wrap their mind around, and make peace with, something like SMA. So I wanted to express my thoughts on having pride as a disabled person (as much as I am able to despite not actually being disabled myself), and spreading awareness of a specific diagnosis, and how expressing both are compatible, and desirable, within the faith. They’re not mutually exclusive values as some on either side would believe, though its hard to get there without a Christ-entered framework to approach it from.

First, let’s tackle awareness, as it’s the approach most of us are familiar with regarding any diagnosis or disease. We wear pink, dump buckets of ice water on ourselves, or light it up blue to bring awareness to a particular cause (like breast cancer, ALS, or autism) and ideally inspire people to give money to fund research for a treatment or cure. Historically in the SMA community, awareness has been spread though images of children hooked up to ventilators, scary statistics, and events held in honor of a child who has died. Society at large is made aware of a horrible disease and ideally is moved to contribute in order to eradicate the suffering of little children. Recently, criticism has been leveled at this approach and thankfully, SMA organizations and other large organizations that serve disabled adults, children and their families are changing to promote a message that spreads awareness and encourages people to give so that people can live a better life as a disabled person. Rather than focus on how awful a disease is, the focus shifts to the dignity of the disabled person and improving his or her quality of life.

As a Catholic, I’m happy for the change. In the first few years following the boys diagnosis, I would often answer strangers questions with the same grim statistics I’d heard. I was still in a negative place personally, and I expressed that through only sharing the negative aspect of the disease. However all that did was make people feel sorry for my sons and for our family and for all people with the disease. It perpetuated the belief that something was wrong with Fulton and Teddy, that they needed to be fixed, and that it would be better for parents and society if we could prevent children like them from being born.

Obviously I was wrong. I learned to listen to the voices of adults living with SMA and other physical disabilities and I began to realize how my sons, and all disabled children and adults, are prefect just as they are created. God knew them in the womb and whatever mission He has for them, they can fulfill it in their lifetime with whatever abilities they were created with. The are happy, living a wonderful life, and doing just fine the way they are. Yes, there needs to be awareness, but it needs to focus on the dignity of disabled people so that we can better serve them through life sustaining treatments and access to the parts of life able-bodied people take for granted. You can live a happy and joyful life as a physically or intellectually disabled person regardless if you are expected to live a few hours, a few days, or the typical American lifespan. What will make the biggest difference is how you are loved and accepted by those around you. That is what spreading awareness should do, build acceptance, not fear monger.

Unfortunately, conflict arises when parents of children who are severely disabled are unable to see any benefit to their child having a disability. And I understand that. I was firmly in that camp for a bit, even a practicing Catholic. There was a divide between what my faith taught, and what I was feeling at the time. For parents struggling in their faith, or with no faith to begin with, the idea that God can bring good from any circumstance is meaningless as are any arguments about a greater acceptance of disabled people in society. They are wrapped up in a here and now in which they cannot see the joy, only suffering. For them awareness is about prevention and a cure so that no one else should feel as bad as they do. It’s why they butt heads with disabled adults rather than learn from them. Their child does not have a future; how can they celebrate that which is going to be denied to him or her?

Some parents can move past this anger and despair in time, even after the loss of a child, but not all. And this pain cannot be ignored or downplayed by people celebrating SMA/ disability pride. Here is where the focus of awareness needs to shift to one of the meaning of redemptive suffering and the peace that can be found by placing radical trust in God. That is ultimately the mission of my apostolate Accepting the Gift. It is building an awareness of hope that can be sorely lacking when you are face to face with a devastating medical diagnosis. Yes, things may be unbelievably hard, and while I do believe God can give us more than we can handle alone, He does not abandon us, and what more awareness can hopefully do is raise up more Catholics and Christians to care for us so we are not alone. Giving money is not enough; we need you to get your hands and hearts dirty in the trenches with us. Walk with us in our pain, model Christ, and make us aware of His love for us and His ability to lessen our physical, mental, emotional, and spiritual burdens. We need you to see and celebrate the dignity in our child so we can see it too.

So what about SMA Pride? Aside from the difficulty of separating it from the LGBQT+ movement and any association of it as a deadly sin, there are definitely things that disabled adults can be proud of. They, like us, are allowed to be proud that they are a child of God; created in His image with inherent dignity that cannot be taken away or diminished due to their intellectual or physical disabilities. God loves them no less than “healthy” able-bodied children and adults. They should be proud of their accomplishments, not because they’re mistakenly viewed as inspirational in our eyes, but because they’ve overcome numerous obstacles in a world not designed or , and resistant to adapt to, disabled bodies. Every time barriers fall and more access is gained, that is a reason for disabled people to celebrate and be proud. As SMA adults come together to celebrate living and thriving with a disease that was once considered a childhood condition, they can now help fight for equal pay, marriage equity, and a more accessible world for all people. They are bringing awareness to what really matters; creating a more just society- enthusiastically fueled by pride in who they are, despite the prejudices many able-bodied people have about them. We can work with them, following their lead, to bring inclusion to our parishes, dioceses, schools, and communities.

So there is room for both SMA awareness (in various forms), and healthy pride this month. Our prayers should be with SMA parents who are struggling without support and without hope and who live in areas without access to proper medical care and the newest life extending treatments. We also extend our prayers to adults with SMA who fight prejudice everyday but who are venturing into new territory and making the world a better, more accessible place for kids like Fulton and Teddy. Let us ask how we can model Christ and His Church to both population: through increased love and support for hurting parents and through the creation of fully accessible parishes that welcome all of God’s children.

Link up for this week is below. Be sure to let your readers know there’s a really long post waiting for them here!