B.L.I.N.G and Invisible Disabilities

B asically L iving I nvisible is N ot G ood
B asically L iving I nvisible is N ot G ood

My 19-year-old daughter came up with the witty acronym of B.L.I.N.G. (B asically L iving I nvisible is N ot G ood). It can be tied to a variety of life lessons.

Cochlear implant “bling” and Assistance Dogs

I am a late-deafened adult and I also have Meniere’s disease. Being “late-deafened” is a fancy way of saying that I lost my hearing after I learned oral language. Hearing loss can be mild, moderate, severe or profound. Although all levels of hearing loss affect the way in which a person freely communicates, a person obviously has more serious problems the more severe their hearing loss is. I think part of the reason that HLAA (Hearing Loss Association of America), ALDA (Association of Late-Deafened Adults), and other non-profit organizations for people with hearing loss have trouble attracting new members is that for most people, hearing loss is a nuisance and not a life-changing disability.

According to NCHS (National Center for Health Statistics), there are 37 million Americans who have trouble hearing (NCHS, 2006). A study done by Gallaudet in 2001 reveals that 8 million Americans have difficulty hearing even with the use of a hearing aid (Gallaudet Research Institute, 2007). This leaves approximately 29 million Americans who communicate effectively in spite of a hearing loss. This vast majority of people with hearing loss enjoy the invisibility of their disability as they function well “in spite of”. They “look” like everyone else. They do not have a need for support groups, advocacy or a connection to a non-profit organization because they have no need to identify with the hearing loss group. (I discussed why some people choose to not seek help when they DO have a significant loss here.)

When it became obvious that my own hearing loss was progressive, I began to realize how difficult it is to have an invisible disability. Prior to my cochlear implant in 2005, you would never know I had a disability unless I opened my mouth to speak to you. My speech was beginning to deteriorate just a little bit due to the fact I had not heard my own voice in a number of years. I may have interrupted conversations, not realizing someone else was speaking. I had trouble balancing the volume of my voice and more often spoke to softly than to loudly! Meniere’s disease kindly bestows noticeable symptoms for me when it’s a rainy or overcast day. You would never know it, however, unless I tried to walk a straight line or go up or down steps!

Being surgically implanted with a cochlear implant felt a little bit like a miracle. I could hear my own voice again in most environments and my speech improved dramatically over the period of only a couple of months! Having a cochlear implant does not mean I hear perfectly, however. There are some situations with a lot of background noise or poor acoustical environments that I may have to ask for a “repeat”. I may have trouble following conversations if I’m extremely fatigued. Prior to my implant, I had already adopted bright colored ear molds for my hearing aids and wore my hair up. I found out through a great deal of “trial and error” that it was in my best interests for people to know that I have difficulty hearing. After I received a cochlear implant, I didn’t see the need to change my adopted visibility. I wear “bling” on my CI, and it does draw attention to the fact that I hear but not in a normal way. It allows people to quickly identify that they may need to be sure to face me when they talk, or be aware that if I ask for a repeat it is not because I’m not paying attention. I really believe my “bling” helps other people as much as it helps me.

Having a hearing assistance dog who also does balance related tasks for me, brings attention to my disability as well. If you’ve ever thought about having an assistance dog, but do not like to field questions or have people notice you, then you may want to reconsider. Chloe comes from Fidos For Freedom in Laurel, Maryland. It’s not her bright red vest that gets attention. What makes people notice is simply the fact that she is a DOG! It’s not very often you see a dog in a store, restaurant or even church!

B asically L iving I nvisible is N ot G ood

Recently, God allowed a very mean person to be a part of my life for a short time. I say that GOD allowed this person, because it actually served to remind me that there are bigoted mean people who not only do not understand disabilities, but choose not to understand. Through FaceBook, I ended up “accepting a friend invite” because they were involved with someone I trusted. It didn’t take very long for this person’s true colors to be revealed. Comments left on my uploaded photos or “Notes” and eventually conversations between this person and myself and my husband through “instant messaging”, all revealed how there are still people who don’t “get it”. We received over 45 comments and messages from people astonished that there were still people like this out there! Some people do not realize that disabilities are often invisible. They do not understand that there are good reasons to make an invisible disability… visible! Some people do not understand that disabilities are not chosen. There are some that do not understand that disabilities may not only be life changing, they can be terminal. Many diseases and disabilities are those that shorten a life. God used this person in my life to remind me that some people are not only uneducated about disabilities, but they may willfully choose to believe the worst about those who have them. (It’s a great relief to not have to put up with this person anymore, but I do thank God that it was used to open my eyes!)

For me… basically living invisible is not good. There may be other people with Meniere’s disease or deafness who choose to live another way. I respect that! “Bling” works for me. It reminds even those I know well that in spite of my speaking perfect English (with the exception of a southern accent), I do not hear normally. It reminds them that if I repeat part of what I heard and wait for a repeat of what I didn’t… that it isn’t because I chose to stop paying attention. If I say, “whoa” under my breath and touch the wall in order to snap my visual field back into focus, they are reminded why I have a dog who picks up things for me and “braces”.

“Bling” and an assistance dog both serve to allow me to live with some independence. I don’t have to have family members with me now just to go to the post office or a store.

Invisible Awareness Week   0e1c199b505195ca9883a3faad5994b4

There are others who know what it is like to have an invisible illness or disability. September 14-20 is “Invisible Awareness Week“. If you or someone you know have an invisible illness, I encourage you to check out this site!

If you do not have an invisible disability, chances are you know someone who does. Do you know some of the strongest advocates for people with disabilities are those who do not have one? Think about it… who will get further with a person who misunderstands the needs, reactions, or communications from a person with an invisible illness or disability? Certainly people who live with invisible illnesses or disabilities should learn to advocate in a positive way. Their ability to do so helps us all! However, if you take a person aside and teach them… explain to them a little bit about another person’s disability or illness, it may mean even more! Every person can be a strong advocate for others.

Denise Portis

© 2009 Hearing Loss Journal

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9 thoughts on “B.L.I.N.G and Invisible Disabilities

  1. This is part of why I have applied for a Hearing Dog for Deaf People (as they are called in the UK!) – not just for the assistance, but also for raising awareness that I am different by offering a visual clue!

    As a teenager this would have been the last thing I would have done – draw attention to my deafness – no way!!! But now? It is far more important for be part of the community and one of the ways of doing that is to alert people before I have even met them that I am somewhat different.

    I don’t have a dog yet, but I look forward to the day I get one should I be accepted on the programme – not quite sure what the cat would think though!! 😉

    1. Chloe has been a very welcome addition to my own life Sam! She gets along with my cats very well too! I think they try to expose assistance dogs to other types of pets when very young. So hopefully, your hearing dog will treat your cat like family!

      Sincerely,
      Denise and Chloe

  2. I enjoyed reading your blog everyday. I wanted to say to you that i love this post you just wrote. I know how you feel about having disability and its invisible. I wanted to tell you that. I became profound deaf after all these years of being mod-severe in both ears. I lost it. I am getting new hearing aids in about 1 more week. I heard with these aids things i never hear before. I must note that… your post today helped me because I never really wore my aids my entire life because I was made fun of. Now that im mature and I dont really care what people think I will be wearing them. Like you said the “BLING” works for you. Im so glad that does. Im glad that you make your hearing loss aware. Im not quite sure hwo to do that. I am to be honest I havent worn aids because other aids didnt benefit me in the past although I spent so much money on them. Plus I didnt have the proper Audiologist 24 years later now i do. Finally Im giving the chance to hear again these aids or more expensive then ever but so what.. I want to be able to hear even if it takes me alot of speech theapy again. I guess my biggest fear is making my hearing loss noticeable for the first time. Thanks for the post it has helped me realize that this is important.

    Im sorry that you had problems with that bad person. Glad that is over with. I learned people are cruel. We just have to deal with them. In my situation I was confused my entire life made fun of. I didnt really knew i had hearing loss. I wasnt told the right way. Trust me I know what it was like. I still remember day people call me ” deaf girl” or throw my FM system of the desk. Now I just ignore the mean people.

    Smile-Hugs,

    Danielle

  3. Great blog, I pretty much know how you feel. I also have Meniere’s Disease, and have been left 90% deaf in my left ear.

    The Meniere’s Disease I have gotten under control through diet changes and very high quality dietary supplements. But my deafness has remained.

    In both cases it’s kind of invisible for other people. When I was sick with Meniere’s Disease, people would often say how “normal” I looked.

    Now with my hearing so bad, it feels very lonely in group conversations. I can’t keep up and people don’t really hide their irritation at my constantly asking, “pardon?”

    Take Great Care

    Mike

    1. I take Manganese and try to reduce my salt intake. Do you have a link you could point me to about other “high quality dietary supplements”, Mike?

      I’m blessed in many ways as it appears my Meniere’s is more often triggered by bad weather. As long as it’s nice… smile – I can walk normally!

      I’m sorry to hear about your hearing… I have been there! Have you ever considered a CI?

      Denise

  4. This is a really insightful post! LOVE the CI bling!
    Sorry, you’ve probably already explained more about Chloe somewhere on here, but what kind of sounds does she alert you to? Does she wake you up at night (or would she, hypothetically) if there were to be a fire, or if someone rang the doorbell, or even a crying baby?
    I’m just curious how having a hearing assistance dog works!

    I think I’m kind of young for one, but just thinking ahead 🙂

    1. Hey Lesley!

      If you go to the following link, you will see what hearing assistance dogs are often trained to alert too: http://www.fidosforfreedom.org/assist-dogs/assistdogs.php

      Chloe is my alarm clock in the morning, and she alerts me to someone calling my name. She automatically retrieves dropped items like keys, credit card, etc., if I drop them and don’t “hear them” drop. She alerts to the doorbell, smoke alarm, etc. The thing she alerts to most often is a kitchen timer. The main reason is because I use it for everything. When teaching at school, it acts as my “school bell”, as she has been trained to alert to it. It set it 5 minutes before I’m suppose to release my students. I also use it for cooking, or if I have to time anything… she will let me know “time’s up!”

      Hope this information helps!

      Denise

  5. I recently came across your blog and have been reading along. I thought I would leave my first comment. I don’t know what to say except that I have enjoyed reading. Nice blog. I will keep visiting this blog very often.

    Betty

    http://smallpet.info

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