People Who Get It

Hearing loss is often referred to as the invisible disability. Some will argue that it is NOT a disability. I think people who think that however, do not have a degree of hearing loss in which their life is different because of it. If hearing loss does not cause you to miss out on what is being said, and has not directly affected your communication, it really isn’t a disability – yet. If you have a progressive hearing loss, you eventually scrape together the money to buy a hearing aid, and then assistive devices, and perhaps eventually a cochlear implant. You recognize the fact that you have a disability and learn to live with it.I have people in my life who do not “get it”. It is unfortunate that these people are close to me – or at least use to be. When they question why I wear my cochlear implant coil where everyone can see it, and even decorate it with “implant bling”, I realize they believe I’m drawing attention to the fact that I have a hearing loss. Recently partnered with a hearing assistance dog, Chloe, I have learned that instead of being proud of all of the hard work I have put into my training they question why I would want to have a dog partnered with me in public.

Sometimes I think that I have done them a disservice in that I was not very open about how my progressive hearing loss affected my life. I did not let them see the pain, the isolation, the depression, the eating disorders, and the suicidal thoughts. I survived all of that, and am a better person for it. Perhaps if I had been more transparent, they would rejoice with me in what I am hearing with the cochlear implant. Instead they continually forget what my implant is even called and refer to it as “that thing”. If they had seen how I was “then”, perhaps they would see how independent I have become and embrace assistive listening devices, and hearing assistance dogs.

The people in my life who “get it”, are my immediate family as my hearing loss has affected them as well. Knowing that one day my “empty nest” will have a dog to alert me to our alarm, the phone and the door when Terry is out of town gives them stability and relief. “Mom” is going to be ok.

Other people who “get it”, are people who also have hearing loss or someone in their family does. They “get it”, because they live it. They understand. I receive not only emotional support, but even spiritual encouragement from so many of them. They know what hearing loss can do, and they also know how strong it can make you with supportive people around you.

I do have one person in my life; a dear friend named Sandy. I am her only link to hearing loss. Everything she has learned about hearing loss has really been from my family and I. She was my “cheerleader” all through the research I did for the cochlear implant, and she has been supportive of every assistive listening device I have purchased in order to teach better. She also knew nothing about hearing assistance dogs, and yet greatly supports the fact that I will have my partner with me next school year… in her school. Because I know so many people who “don’t get it”… even some very close to me, I don’t really understand why Sandy “does”. However, I am grateful for it!

I think the internet is a fantastic thing. I have “found” people just like me all over the country… even the world. I have access to wonderful yahoo groups like bhnews, and Hearing Dog Teams, many HLAA chapter/state groups, and message boards like myhearingloss.org. I receive digests via email from superb newsletters like HOH-LD News (Hard-of-hearing/Late deafened) and some Google groups related to hearing loss. As members voice their concerns, and questions, other members rally and respond. I believe it has revolutionized the hearing loss community. For you see, we understand this invisible disability… and realize its ok to make it visible. Through education, advocacy, and support we shed some light on a disability that was once in the dark. I appreciate my association with people who “get it”.

I’ll always have people in my life who “don’t get it”. I can try to educate them and respond to them in a positive way. I can do this because of the support I have from people who do “get it”. However, those people who do not no longer have any influence or power over who I am or who I will be.

http://groups.yahoo.com/group/bhNEWS/
http://groups.yahoo.com/group/hearingdogteams/
http://groups.yahoo.com/group/txhll/
http://groups.yahoo.com/group/HLA-LA/
http://www.nchearingloss.org/
http://www.myhearingloss.org/forum
http://groups.yahoo.com/group/HOH-LD-News/
http://groups.google.com/group/hearinglosshaven

Denise Portis
©2007 Hearing Loss Diary

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5 thoughts on “People Who Get It

  1. This is beautiful. This best describes were I am in my hearing journey. Would it be okay for me to post this blog on my site? I would love to share this with the people I know, the ones that I’m sharing my experiences with, who are trying “to get it”. I think it would truly be helpful.
    Thanks.
    AmyKay

  2. Please feel free Amy. If my blog can help others … super! I use every resource I have to best explain my own life… including the blogs of others who have a hearing loss.

    DeniseP

  3. Hi Denise,
    Your blog is both beautiful and a miraculous lifeline. Thank you for having the courage to write about your experience with such honesty.
    I “get it” about invisible disabilities, and the effect that an “invisible disability” can have on every part of a person’s life, and the lives of the people in their lives. You and your blog make a difference (for the better) in my life everyday.
    From my heart to yours, Thank You.
    -Kim B.

  4. Hi Denise,

    I’ve coined a new sign for all of my friends who have a cochlear implant (CI); It’s like the sign for deaf power; however it’s CI (sign) + power! I want to get it because you matter to me. I love reading your blog and I get it! CI Power Now! Smile

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