Looking Beyond Face Value: A Story from the Barclay Family

Over the past two blogs, I have barely scratched the surface of the Disability Rights Movement. There is still much to unpack. However, I hope that these issues have taken root in your heart and provoked you to act. 

Now, you may be wondering where my passion for disability rights comes from. First, it comes from being a Christian and wanting to bring justice for all. But secondly, it comes from my family.

When I was four years old, my youngest brother Éamon was born. My mom struggled through a very difficult pregnancy. The doctors told her that Éamon’s condition was so extreme that he wouldn’t survive a day outside of the womb. They didn’t believe that she should continue with the pregnancy. But, through God’s strength, my parents persevered and brought Éamon into the world. 

He was born with severe disabilities. His brain was not fully developed, and he presented as a child with a severe neuromuscular disease. Additionally, his lungs were underdeveloped, and he was diagnosed with congenital pneumonia.  

Throughout his life, Éamon has gone through countless medical procedures and hospital visits. He doesn’t have a known diagnosis, and his condition has changed overtime. 

Today, at 15 years old, Éamon still lives with many disabilities. He cannot walk and therefore is bound to his bed or wheelchair. He cannot talk or breathe through his mouth and instead, breathes from a device called a trache. He also cannot eat himself and so he gets his nutrients through a feeding tube.

Despite his many disabilities, Éamon is the most joyful person I have ever met. He always has the biggest smile on his face and lights up every room he enters. His joy is also his greatest testimony of the God who created him and gives him life. As my mom has said, Éamon accomplishes her fundamental prayer of purpose for her children. His purpose is to bring joy to others and his connection with people goes beyond what we can process ourselves. It goes deeper, and he brings joy to the soul. 

As I mentioned in my previous blog, Jesus speaks in John 9:1-3 about God using disabilities to display his works and power to others. This is so evident in Éamon’s life. His joy and strength have brought many to Christ.

Being a sister to a brother with severe disabilities has encouraged me to act and speak up. Éamon does not have an audible voice and therefore it is my duty as his sister to advocate for change and better care for him and the disabled community at large. 

At face value, you may be tempted to glance at Éamon, see his physical state, and walk right past. But, if you were to take a moment to look at Éamon to see his greater purpose, an interaction with him could bring great value to your life.

Our greatest desire is to be known. It is Éamon’s too as well as all of the other members of the disabled community. So, take the time to get to know someone, because their physical presentation is not an indication of the goodness that can be found inside their heart.

Posted by: Ivy

Written by: Maeve

 

3 thoughts on “Looking Beyond Face Value: A Story from the Barclay Family

  1. Beautiful, Maeve ❤️ Éamon can communicate more with that beautiful smile then most can with words. He is so blessed to have you for a big sister and God chose the absolute perfect family for him, no doubt about that. I love him and you so much. Thank you for this post.

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