a man's profile with a wheelchair back and headrest shows a small man in a wheelchair inside yelling and creating an echo

Breaking the SMA Barriers

Everyone has to deal with barriers. When we think of spinal muscular atrophy we probably assume these barriers are physical. I want to talk about the barriers we put on ourselves. Do you let your SMA define who you are? 

Now this is a loaded question.

Not all SMA barriers are physical

Everyone is defined by something. Living with spinal muscular atrophy is such a physical impairment that it is hard to not let it define us.

I have struggled with these self imposed barriers most of my life. Unfortunately society subconsciously drills into our heads that people with disabilities are “not worthy” or “unable.”  While dealing with our physical barriers we need to work harder to overcome these “other” barriers.

Emotional barriers

When living with any disability we become dependent upon outside assistance to get us through our day.  Requiring this level of physical assistance gives some people the feeling that we are also unable to think for ourselves.  Obviously this is the farthest thing from the truth.  This is where we need to do our own “work” and define who we want to be.  This work has been a long process for myself.

As a human race we tend to fall into the mindset of worrying about what others think about us.  I fell into this trap too and if I’m being 100% honest I still slip into the trap from time to time. The older I get through the easier it has become to get over that barrier.  This wasn’t easy for me when I was younger, especially during my teens.  My parents helped with their advice, love and support.

Barriers of worrying what others think

However when we are teenagers we don’t always take advice from our parents.  We fall back into the trap of worrying about what others think. It’s never easy when we don’t “fit in.” 

It’s human nature to want to be included.  However it can be the hardest barrier to overcome. That feeling of being excluded. These feelings can consume you if you let it. Remember spinal muscular atrophy affects us physically. However we can prevent it from controlling our whole life.

What barriers do you face?

Avoiding the tendency to check out

When we let these feelings overtake our minds we can find ourselves “checking out.” This can be a dangerous path to take.

We already don’t have full control over our physical being. When we check out we are freely giving up control of our lives. We are succumbing to the societal thinking of disabled people.  Don’t do that!

It is not always easy to fight the feelings. However it is worth it. The more you do it the easier it becomes.

Overcoming barriers necessary for independence

These other barriers may be harder to overcome than the physical ones we encounter. However in order to achieve independence we need to work hard and overcome these barriers. It is important for our mental health.

Surround yourself with people who love and care about you. Treat them with gratitude and kindness but don’t let them walk all over you. Make sure you stand up for yourself. Set a tone that just because you’re physically disabled doesn’t mean you’re unable to make decisions about your life.

When there is a will there is always a way!

By providing your email address, you are agreeing to our privacy policy.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The SpinalMuscularAtrophy.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

Community Poll

Which type of SMA do your symptoms correlate most with?