A person that I know with invisible challenges (Fibromyalgia, IBS, and Chronic Fatigue) said to me recently, “Denise… you have mostly positive advocacy experiences because you make your invisible disability – visible. That isn’t always possible for other people with invisible problems!”

I thought about that statement for a week. Then I thought about it for another week. I actually thought about it for a third week, which for me? It’s nearly impossible for me to “simply think” on an issue without going ahead and blogging about it! I decided to do a “test”. I would dampen the visibility of my disability and see if I had any problems as a result. If you don’t want an invisible disability to ever become apparent – don’t get an assistance dog. Nothing shouts, “THERE’S SOMETHING DIFFERENT ABOUT YOU” more than having an assistance dog with you. Let’s face it… it’s not the norm to see a dog in a public place. Having a canine partner is not for the faint of heart, for you will have questions, be stopped constantly by admirers, skeptics and the occasional unattended child. Because of my balance problems, having an assistance dog has yielded far more benefits than any negatives. I wasn’t about to leave my assistance dog at home for the sake of a “test” so I had to think of other ways. Thankfully, those who know me well are so accustomed to seeing Chloe with me, she is almost invisible as well.

I have always worn my hair up since acquiring hearing loss. I made the decision early on to make sure my hearing aids could be seen. The decision came as the result of being knocked out of the way in a Sam’s warehouse in 2000. Someone had been trying to get by and I continued to look at the shelves since I couldn’t hear the “excuse me” in such a cavernous place. I think the woman who knocked me down was equally as startled as I, for she certainly had no intent of sending me to the floor. She said, “Why didn’t you move?”

I replied, “I’m deaf”, and watched the color drain out of her face. She helped me up and hurried away. That week I began to wear my hair up AND I opted to purchase brightly colored earmolds for my hearing aids. In 2005, I was implanted with the cochlear implant. It was very natural for me to continue to wear my hair up and to add the CI “bling”. Making an invisible disability – not – has helped me. The only time I’ve had a problem with my CI being so visible is when I would on very rare occasions run into a defensive, belligerent, culturally Deaf person who was vehemently against the technology.

So for my “test” I thought I’d wear my hair down and not have any visible assistive listening devices. I chose to do it on a “long” work day. Shortly after arriving at school I ran into one of my student’s parents. I couldn’t discern any difference in the way we interacted and communicated. I went to the office and made copies for my classes, and checked my folder for any notes from the administrator. My first class seemed to go OK. During discussion time, it can get pretty noisy. It seemed to me students addressed their desk instead of looking up when speaking, but I was very aware I could just be guessing at that. Another student helped me pull the overhead projector screen down and I could tell he was responding to a question with his back to me as he reached to pull it down. Again, I was very aware this was probably just my imagination and… after all what proof did I have that this doesn’t happen on a normal school day?

I was well into the afternoon classes and began to think that this was a poor test since all of my students know I have a hearing loss. I was already “plotting” to venture into a store or restaurant with my hair down for a more accurate test. That may actually BE a better way to test my theory, however I was surprised by a late afternoon comment.

After a requested “repeat”, a student said, “Oh sorry! I forget you have a hearing loss when your hair is down!”

Yes. I realize that my students interact with me quite a bit and are more likely to notice a change in my hair. This meant I needed a new test.

I went to Costco this weekend with my son. He’s 6’3″ and strong enough to assist with all those items we buy in BULK to save money. I deliberately wore my hair down. I hate going to Costco on a Saturday because it is always so much busier. However, I figured for this test… that would be a good thing. I pointed out items and my easy-going, “glad to be of help” son would load them up on the big cart. I had several people stop to admire Chloe and ask questions about her. It seemed pretty standard until my son pointed out…

“You know they only ask how long you’ve been training her because they can’t tell you have a hearing loss, right?”

Ta da! This was the proof I needed, right? Who knows. I did know that my friend with invisible challenges was right about one thing. I do try to make my disability visible and usually it is to my benefit.

I enjoy answering questions about my CI and my assistance dog. People ask great questions for the most part, and most are curious because they know someone who has hearing loss or someone that could use the assistance of a canine partner.

Should everyone with an invisible disability make it visible?

No.

Cochlear implant manufacturers produce the CI’s in a variety of colors… usually HAIR colors. Individuals choose a processor and magnetic coil based on their hair color in order to eliminate the visibility. The idea is to help you keep it “your business” if that is what you desire.

I’ve heard from others with invisible challenges or disabilities who have said:

1. I don’t want anyone feeling sorry for me. If I want someone to know about it, I’ll tell them at an opportune moment.

2. I don’t want my co-workers treating me any differently. It would be terrible if they thought any advancements or promotions I got were the result of special privileges.

3. I don’t want to appear weak. I have bad days but do my best to camouflage them.

4. I don’t want to draw a bull’s eye on my disability, putting me at risk for crime or making me a target.

5. I want people to know who I AM, and not judge me or define me by my disability.

These are legitimate and persuasive arguments. If you have an invisible disability or challenge, it is YOUR CHOICE how open you want to be about it. My heart goes out to those struggling with depression or mental illness. These challenges can be very difficult to disclose. Sometimes invisible challenges carry with them a stigma that can wound and demoralize an individual. Never forget that we are people first. We are NOT our disability or challenge. I chose to look at it as my disability is simply a part of who I am now… a new me. As we mature and/or age (as the two do not always coexist), all of us change. We may choose to color our hair, or take care of wrinkles through the help of a trusted plastic surgeon. Maybe we wear glasses or contact lenses now. Many choose to do what they must to avoid the stigma of an invisible challenge. Those who choose to keep their challenges hidden have the right to do so. I do not judge them and trust my personal choice is treated with the same respect.

Care to comment on why you do or do NOT make your own invisible challenges or disability more visible?

Denise Portis

© 2010 Personal Hearing Loss Journal