StoriesOct 9, 2020

Spina Bifida Awareness Month – Benjamin Loughrey

 “My story begins on September 10, 1988. I was born in a small town in Wisconsin, called Manitowoc, along the shore of Lake Michigan. It was my father’s first marriage and my mother’s second. She had been married once before, and had two daughters from that first marriage. I was my father’s first child. I have been told that they were very happy, when they found out they were expecting. They went through all the scheduled doctor’s appointments and check ups during pregnancy to check my progress. They were told everything was going as planned. This included many ultrasounds and two amniocentesis tests. Everything show up as “normal.” So, after all that, much to their surprise, I came out born with Spina Bifida. I’ve been told they were devastated. You see, I was told that’s how they felt, because I don’t actually know. The surgeons/doctors and nurses all told them my outlook was grim because of my Spina Bifida “diagnosis.“

I probably wouldn’t make it out of childhood. This new discovery meant I’d have many doctor’s visits and checks up, to monitor my condition for the first year, or so, so a game-plan could be established for the planning of my care in the future. This all came at my parents so fast. My father worked long hours at the family owned business he ran, with a couple of his siblings. This left my mom, a stay-at-home mom, to have to manage my care for the first month or so, of dr visits and check ups, with all the specialists, in Milwaukee about 2 hours away, by herself, a few times a month. After a lot of thought and consideration. They talked it over, and felt it would be too difficult to give me the life and opportunity they felt I deserved. So, the decision was made to put me up for adoption. I was only in foster care for a short period of time before landing in my second foster home. They fell in love with me instantly. I was adopted by them a short time later. My adoptive mom was an RN and had been for many years. She felt she and my new dad (her husband) had what it took to take care of me, and give me the life I deserved. 


School was tough. Kids were mean. I was picked on/made fun of, and called lots of names for being “disabled,” and having to use a wheelchair. Teachers, Administrators, the school psychologist all said I’d never make it. In school, and in life. I was told I’d never make it through High School and graduate. They all thought, because I had a physical disability, that I also had a mental disability as well. That I would need around the clock care, with someone doing everything for me. 24/7/365. That turned out to absolutely not be the case. Im now about to turn 32. I live in Arizona and I enjoy it, the weather is great. Lots of activities and places to go for me to maintain an active and healthy lifestyle. 

Looking back, having a loving and supportive family who taught me to work hard, and that I could achieve anything, regardless of my “disability,“ truly helped shape me into who I am today. Spina Bifida doesn’t make me sad, mad or bitter in any way shape or form. Does it suck? At times, yeah. I don’t think anyone would be happy to have to go through 35+ surgeries before they had turned 30. But, whining and complaining never got me anywhere. It is what it is. You can’t change that. It is who I am and most importantly, it has shaped me into the person I am today. It’s not like I, or anyone else diagnosed with a disability such as Spina Bifida, really had much of a choice in the matter.

You have to deal with the hands you have been dealt in life. You can either sit around moan and complain about how bad you have it, and fold the cards you have been dealt. Or, you can take those cards you have been dealt, in this game of cards called “Life,” and play. I chose to play. That is because of the reality I’m currently facing. I, like the majority of my fellow disabled/wheelchair bound men and women, am a “guinea pig/trailblazer“ of my condition.

We didn’t have a choice. We did and will continue to do what we have been forced to do from the start. That is to speak up and make changes for future generations. Not only do we not have adequate healthcare, (thanks to pre-existing conditions) We often struggle with employment, adequate living conditions, and the daily nuances of living in an “able-bodied world“. (Stairs are everywhere! ) Inaccessibility still exists.Yes, right here in America. Even today. The ADA was a great starting point, but, there is much left to accomplish. It is very tiresome and mentally exhausting. This is who I am. This is why I do what I do, and promote equality for people with disabilities. I’m just like you. I work. I own my own home. I drive a car. I shop for clothes and groceries myself. I’m a productive member of society. I go out with friends and watch sports on the weekend. I stay very active. I work out, and play sports as much as I can. I do this all from my wheelchair, while I have a disability the medical and scientific world calls Spina Bifida. Maybe one day, that term will no longer be used, if medical advances finds a “cure.” Until then, I will continue to strive to be a better version of me tomorrow, than I was yesterday. Life is what you choose to make it. It’s up to you. I choose to be the best version of me, that I can be. I see nothing but improvement in the future.” – Benjamin Loughrey, Born with Spina Bifida