Why Do People Assume Everyone With Hearing Loss Can Sign?

We would love for you to make videos to reach a hearing loss audience, the media rep suggested. “Sure, that sounds good,” I replied, “assuming the videos would be captioned, of course.” “But wouldn’t you just sign in them?” she asked with some confusion.

I stopped dead in my tracks in surprise. “Most people with hearing loss, myself included, don’t know sign language,” I explained, “particularly if we acquired our hearing issues later in life.” “I didn’t know that,” she said.

This was an intelligent, educated person working in media for a patient advocacy company. If she doesn’t know this basic fact about people with hearing loss, imagine the ignorance of the general public.

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Hearing Loss: When You Feel Like Your Senses Fail You

One of my favorite parts of the annual HLAA Convention is the inspiring speakers. This year was no exception. Rebecca Alexander, a psychotherapist and author, was the keynote. She has Usher syndrome, which means that she is progressively going deaf and blind. Her vision problems presented in childhood, but when she began having trouble hearing in college, she received her diagnosis. Both senses would be taken from her over time. This is a crushing blow, particularly at age 19. The way she has dealt with such a huge loss is inspiring.

It is impossible to imagine the terror of losing two senses simultaneously, but I felt myself in her shoes as she shared her journey of acceptance and empowerment. I could relate to the stories she told about her struggles and the silly and brave things she did along the way. One story particularly resonated with me — the moment she realized she could no longer trust her senses.

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Interesting Reads: Ephphatha By Dr. Thomas Caulfield

I enjoy reading inspiring stories about people with hearing loss, especially tales like the one in Ephphatha, a new book by Dr. Thomas Caulfield. The book shares the courageous journey of his son Christopher, born profoundly deaf, and his struggles to combat and overcome this disability through much of his young life. There were many ups and downs, but through hard work, cochlear implant (CI) technology, perseverance and tremendous familial support, Christopher matures into an intelligent, kind, and purposeful man. It is uplifting to go on this adventure with him.

Today, Christopher Caulfield is a tremendous advocate for the disability community, including people who are deaf or hard of hearing. Regular readers of this blog might remember him as one of the Cornell Tech students working on captioning glasses that I discuss in a prior post. This summer, Christopher will be joining Microsoft as a Program Manager within the Cloud and Artificial Intelligence group. Over time, he hopes to get involved in Microsoft’s accessibility initiatives for people with hearing loss.

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Will You Be At The HLAA Convention This Year?

Hearing Loss Association of America’s (HLAA) 2019 Convention is only three weeks away. Will you be there? This year the convention is in Rochester, NY, home to Rochester Institute of Technology (RIT) which boasts “an internationally recognized education for deaf and hard-of-hearing students.” Partially because of RIT, Rochester is a hub of activity for the deaf community and incredibly welcoming for people with hearing loss. It even has a local yoga studio that offers ASL-interpreted yoga classes every Saturday morning. And the airport is looped!

This will be my fifth convention. Each year I am thrilled to meet, mingle with and expand my hearing loss community. Usually I come away with at least one new hearing loss friend and a handful of tricks and tips I can use to make the world more accessible. All sessions are looped and have CART (communication access real-time translation), so you won’t miss a word. I’ve never attended a conference that is so accessible for people with hearing loss.

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The Language of Disability: What’s In a Name?

In Shakespeare’s Romeo & Juliet, Juliet famously asks, “What’s in a name? That which we call a rose by any other name would smell as sweet.” She wonders how the name someone has can define them, rather than the characteristics of the person himself. This seems logical enough, a name is just shorthand for describing an actual object or state of being, but when it comes to disability, a name can take on significant meaning.

I recently attended a panel discussion hosted by the Museum, Arts and Culture Access Consortium (MAC), a group whose mission is to promote access and inclusion at cultural institutions in the NY metro area. I have been to a handful of their workshops and always learn something. This session focused on language and disability, and the importance of getting the words right in order to reduce stigma and promote conversation about disability. A very complex issue.

I share my take-aways from the meeting below. Please share your thoughts in the comments.

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