Leaning on support networks doesn’t negate our independence

There’s a trend taking root in the SMA and disability communities that has me worried. It’s the idea that to gain independence as disabled adults, we must separate ourselves from our support networks and find ways to manage our lives and healthcare on our own.

Society tells us that everyone should be independent by the time we reach adulthood, and I see disabled people trying more and more to meet that expectation. The problem is that society often operates under a flawed definition of independence that doesn’t always consider individual circumstances or the demands of managing such a serious health condition as SMA.

The absence of a proper support network can be overwhelming and even unhealthy. My friend and fellow SMA News Today columnist Brianna Albers has been experiencing the negative effects of an insufficient support network firsthand. Although she and her family had an abundance of resources to support someone with SMA during her childhood, she’s finding that there’s much less available to them now that she’s reached adulthood, a realization that has led to bouts of depression.

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In a column titled “Adults with SMA need and deserve better support systems,” Brianna writes, “I try every day to advocate for myself, to be my own support system, but at the end of the day, I only have so much energy. Caring for someone with a rare disease is a full-time job. And it is not something that can be feasibly handled by one or two people.”

I find it rather alarming that it’s become normal for the disability community to endure the struggle of going without help in the name of so-called independence. How did we let this become acceptable? Since our community consists of many resilient, clever people, some might be able to make it work, but at what cost?

Although anyone can experience this dilemma, it seems especially prevalent in the disability community. When able-bodied families require assistance with child care, medical care, guidance and resources, favors, or other needs, we don’t typically chastise them for overreliance on others. We offer to support them. Why, then, do we hold disabled individuals and families — whom we know are juggling more than the average — to a different standard?

Changing the narrative

I’d like to suggest that rather than being a hindrance, as seems to be a common belief, the interdependence of support networks actually serves to enhance one’s ability to achieve greater independence. Having assistance and encouragement enables us to accomplish more, maintain good physical and mental health, and allows us to be better prepared in unexpected or trying circumstances.

This concept is echoed by another friend and fellow columnist, Alyssa Silva, in a recent column titled “Inner strength and external support help me navigate life with SMA.” After spending an exhausting day at the hospital seeking treatment for a painful tooth abscess, Alyssa reflects on how her support network provides for her when her needs become too difficult to manage by herself. That love and support then fuels her own inner strength, which she uses to persevere through challenges.

Alyssa writes, “This recent trip to the emergency department exemplified that my strength to manage this disease comes from the support of those around me. The unwavering support of my family, friends, and medical team also bolsters my inner strength. They’re my anchor, especially during my most challenging moments.”

In my own life, I depend on other people daily to complete tasks that SMA prevents me from doing, such as making meals and tube feedings, brushing my teeth, driving my wheelchair van, doing laundry, clearing mucus from my lungs, and so much more.

Managing and coordinating my healthcare alone would be extremely tiring and time-consuming, so it’s better to share the workload with others. Instead of being consumed by my disability, this help affords me opportunities to rest, enjoy quality time with family and friends, pursue passions and recreational activities, and be an active, contributing community member. My life becomes balanced and well-rounded.

I am a successful, independent woman, and I’m grateful for all the people who help make that possible. Without people to get me out of bed, place the right technology and tools in my atrophied hands, and provide for my countless needs throughout the day, I’d be about as productive as a talking sack of potatoes. Because I have incredible support, I can chase my dreams and make a difference.

In a world that sometimes tells us to choose between independence and support networks, we can push back against the pressure and choose to have both. I’m ready to start changing the narrative, but I can’t accomplish that on my own. Will you help me?

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.