I am very lucky – I have a wonderful, supportive family, a fun and rewarding career, and amazing friends. However, it has not always been this way. You see, I have a disability and unlike what you might think of disabilities, mine is hidden.
Living With a Disability
I first became aware I was a little different when I was just a young child. As a natural extrovert, I was great at making friends and playing sports. But school on the other hand was always very challenging for me and I struggled for many years with academics. Despite this challenge, I did everything in my power to be “normal” on the outside and therefore I was very successful at hiding my disability. That all changed though when I knew my son was going to be faced with the same challenges as me.
Faking it No More
The fact that I can share this story today tells me how far I’ve come as it wasn’t until just recently that I even felt comfortable sharing and disclosing information about my disability. So what changed?
After my son was born, I felt our family was complete and the life I created was perfect (he truly is the sweetest kid you will ever meet). But of course life is never this easy and for the first time ever last year, I noticed he seemed to be struggling with some of the same challenges that I dealt with at his age – paying attention, speech issues and other areas when it came to comprehension. Seeing this and knowing how it affected me growing up, I knew it was time to speak up not only for myself but for my son to take the FEAR out of disclosing.
The Fear of Disclosing
The fear is real – I did not want to be judged or have people feel badly for me. When I finally did share my disability though, much to my surprise, the experience was not as I had hoped or envisioned. I always thought that if I let people know I had a disability, then they would immediately understand what I had been dealing with. Unfortunately, I learned this was not the right approach. After all, how could someone possibly understand if that person has no previous knowledge of the subject?
What I learned through disclosure is that it’s not just enough to simply tell someone of your disability, rather, you must take it a step further and educate them in order to expand their knowledge and understanding of the situation. If I were to simply tell them about my disability though without education then I have simply allowed myself to face my worst fears – being judged for my disability.
Communicating my disability and the lack of understanding that followed used to really upset me. But when I look back, I shouldn’t have felt the anger that I did at their lack of empathy. You see, people are not always comfortable with the word “disability” and they often feel awkward even asking questions about it. In addition, it is hard for someone to really understand the struggle if they have not lived with the disability themselves. With this understanding, I’ve discovered that it is up to me to take ownership and be proud of who I am. My disABILITY is a part of who I am but it certainly does not define me. We only allow it to define us when we blame others for their lack of knowledge.
Knowledge is Power
When educating someone about your disability, whether on an interview, hanging out with friends/family, or even at public events, it can be a challenge. I have found though I am more successful when I lead the conversation.
In fact, just a few weeks ago, my husband’s best friend was in town. He noticed what appeared to him to be me talking to myself. He said “Val, what are you doing over there? Talking to yourself?” I laughed and I said “Oh my mumbling? I was actually reading a very long text message, which with my disability I read out loud in order for me to comprehend what is being said.” Jokingly I said, “Jake (my husband) just ignores it by now. Although, sometimes I wonder if he uses that as an excuse to ignore me when I am really talking to him.” Disarming him and taking control of the conversation made him feel comfortable, and as a result, I was not putting him on the spot. Also, I ensured that if it happened again in the future he would know exactly what I was doing – living with my disability.
Humor has worked for me in the past, but you have to find out what works for you. Making someone feel comfortable is the key though. We all have strengths and weaknesses so I encourage you to not let your disability define who you are but instead, let it strengthen and empower you.
“It’s one thing to accept who you are, and another thing to appear in public in such a condition.” ~Robert Brault
Who are you and what qualities do you own? You must answer this question to not let your disability define you. I for one know exactly I am: My name is Valerie Hill I am a wife, mother, daughter, friend, employee, volunteer who happens to live with a hidden disability. Who are you?