What's in a Name?

By Leeanne Seaver and Janet DesGeorges

"My child has just been given a diagnosis of "hearing impaired."  Is that the same as hard of hearing?  Why does the word "deaf" appear along side "hard of hearing" in your materials at Hands & Voices?  Since my child isn't "deaf" will she need special education?"

When a family discovers they have a child with hearing loss, their first grasp of the complexity of new issues is often epitomized by confusion over the 'label' itself.  Professionals, other parents, the media, and deaf and hard of hearing adults will all use different vocabulary to describe the identity of the experience.  What can often be even more frustrating is that they sometimes use the same words with different meanings.  Is there one right way to "label" your child?  Clearly, some parents hate to even attach a "label" to their child, while many deaf or hard of hearing adults wear a "label" with pride.

While this list is probably not exhaustive, some of the common terms to describe the experience have been listed as:  Deaf (cultural identity), deaf, hearing impaired, hard of hearing, hearing loss, hearing disability, medical condition , degree of hearing loss (mild, moderate, severe, profound). There are many documents that have attempted to single out and define each label.*  Some labels are used in context to special education law for students, while some labels are used for self-identity. Yet other labels seek to define the "function" or level of hearing ability of a student/person.  While some labels are fairly clear (when you see Deaf with a capital "D" it is referring to cultural identity), other labels don't necessarily convey any subtextual meaning.

It's a slippery slope, this distinction between deaf vs. hard of hearing children. In some cases, it's easy to see the difference. But you simply will not find definitions that cover the myriad of impact possibilities when it comes to how these kids function in terms of their hearing or communication access. There are profoundly deaf students who are functionally hard of hearing through the support of amplification or cochlear implantation, who may not even have an IEP. One can also be profoundly deaf using the services of a sign interpreter through a 504 Plan, not through special education.  By the same token, there are hard of hearing students with moderate to severe hearing losses who are functionally deaf because their audition has never been developed through intervention or habilitation services.  Further, a child with a moderate hearing loss and good hearing aids may get 100% of the sound message in a typical classroom within her comprehension distance, but the message is compromised with ambient noise and increasing distance. So when a hard of hearing kid isn't getting the message, (although she is hearing lots of noise!), is she deaf??? Students with unilateral or bone conductive hearing loss tend to have voices that sound like those of typical hearing children, but often they are found eligible for special education services for their "hearing disability" based on delay or digression formulas that indicate how far behind their hearing peers they are as a result of their sensory difference.

Hands & Voices works for a quality education, full communication access, and meaningful parent involvement - especially at the systems development leve - to improve the educational outcomes for kids who are deaf OR hard of hearing who are not gaining reasonable benefit from their free and appropriate education. We don't assign "deaf or hard of hearing" qualifiers to our kids based on audiograms. We're concerned with the whole lot of them. At Hands & Voices, we typically do not refer to children as "hearing impaired" in deference to the potential negative connotation of the word 'impaired.'  However, some parents do feel comfortable with that term and use it without a negative attachment to the phrase.

When research publishes results for students who are deaf or hard of hearing, it is recognizing that both deaf and hard of hearing kids may qualify for special services.  Unless otherwise specified, the statistics cited refer to the population of deaf and hard of hearing students who are receiving special education services. We know that the Colorado statistics show that deaf and hard of hearing students are on average three years academically behind their hearing peers. (CIPP, Deconde Johnson, 2000)  When published results are cited for the underachievement of deaf AND hard of hearing students, some may question whether both the hard of hearing students and deaf students are underachieving. While acknowledging that statistics cited are alarming and don't fit the experience of many kids who are deaf or hard of hearing, stats are stats and they don't lie. 

If fact, a child with the label of 'hard of hearing' is often discounted as needing less help, When in fact "hard of hearing" kids suffer academically and socially as the result of their hearing differences - sometimes even more dramatically than profoundly deaf kids. These kids truly get lost in the system with their "invisible" disability, and from the propensity of their school programs to overlook their academic underachievement as the result of their hearing loss. 

Is your child deaf, Deaf, hard of hearing, hearing impaired?  That is for parents, and ultimately their own child, to define for themselves.  Some parents have found it useful to use one term in context to advocacy within the educational system, while using other terms in context to the self-identity of the child.  Ultimately, however, we at Hands & Voices choose to call our children W.A.S.K.'s, Well Adjusted Successful Kids!  How's that for a 'label'!

*Different definitions/Perspectives of 'labels' used for deaf and hard of hearing kids can be found at:

http://www.cohandsandvoices.org

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