medical industrial complex

"as a deaf person, I'd like to say that--while I understand why hearing people and even some deaf people would find this procedure miraculous and wonderful--I really don't share that sentiment. society's obsession with normalization is what causes cognitive and language delays in deaf children. by focusing on making a child able to hear and speak, often their language development is completely neglected until they attend school. the language window closes at 5 years of age, roughly the time when most children start kindergarten. I work at a school for the deaf and I see many kids come to us between 5-10 years of age with zero or very minimal language abilities. these children spend the rest of their school careers trying to catch up with those who were exposed to a natural language (ASL is the natural language of deaf people) at birth or at least at 2 or 3 years of age. it's really sad. this procedure is only a fix for the middle ear structures, basically an invisible, permanent hearing aid that you can never turn off. it won't make a profoundly, severely, or moderately deaf person hearing. even with a hearing aid I have to work hard at hearing. there will never be a 100% fix for deafness. I wish hearing people would stop trying to normalize us and start embracing our natural language and culture. believe me, deaf culture is a beautiful thing to be a part of. I have nothing against people who decide (on their own) that they want this surgery, but to force it onto innocent children, when the long term effects are not known and the success rate is likely very low is unethical.

if this is what it comes to.. I fucking hate science."-vivienne schroeder

medical industrial complex

"here are more failures than success stories with CIs, the industry buries these failures and builds up the success stories, giving hearing parents everywhere the idea that a CI surgery will make their child hearing. It doesn't. Hearing parents of deaf babies are innocent people being preyed on by the CI industry, using their fear of the unknown to promote surgeries and methods that have been time and time again proven NOT to work. If a child gets a CI surgery, but ALSO has full access to ASL and visual communication, that would be wonderful. I know a few deaf couples who decided to implant their deaf child while giving them access to ASL and I think it's wonderful. Unfortunately, the majority don't do this. They decide to normalize their child in every way possible, denying them access to ASL and the deaf community and culture. As a result, these children grow up with significant cognitive delays, limited social opportunities, and ostracized by their peers. You know me, I went to hearing schools all my life because I was hard of hearing and I could function fairly well in that environment. When I got to high school I started feeling the effects of my limited hearing abilities. I would avoid large groups because I'd always be lost in the conversation. I avoided raising my hand in class because a few times I repeated what others had already said because I couldn't hear them. Now that I'm older and my hearing is getting worse, I'm so grateful that I grew up knowing ASL and involved in the deaf community. Otherwise I'd be a very lonely person right now. At the end of the day, even with a CI, that child is still deaf. There will never be a 100% fix for it. There are people who are fighting hard to prevent deaf children from learning ASL, joining the deaf community, and acquiring deaf culture. It's a crime against humanity because in the long run, the child suffers irreparable damage, not only to their ears, but to their social, emotional and intellectual well being."-Vivienne Schroeder

Outcomes of cochlear implantation in deaf children of deaf parents

OBJECTIVE: This retrospective study compared the cochlear implantation outcomes of first- and second-generation deaf children.

METHODS: The study group consisted of seven deaf, cochlear-implanted children with deaf parents. An equal number of deaf children with normal-hearing parents were selected by matched sampling as a reference group. Participants were matched based on onset and severity of deafness, duration of deafness, age at cochlear implantation, duration of cochlear implantation, gender, and cochlear implant model. We used the Persian Auditory Perception Test for the Hearing Impaired, the Speech Intelligibility Rating scale, and the Sentence Imitation Test, in order to measure participants' speech perception, speech production and language development, respectively.

RESULTS: Both groups of children showed auditory and speech development. However, the second-generation deaf children (i.e. deaf children of deaf parents) exceeded the cochlear implantation performance of the deaf children with hearing parents.

CONCLUSION: This study confirms that second-generation deaf children exceed deaf children of hearing parents in terms of cochlear implantation performance. Encouraging deaf children to communicate in sign language from a very early age, before cochlear implantation, appears to improve their ability to learn spoken language after cochlear implantation.

http://www.ncbi.nlm.nih.gov/m/pubmed/22906641/

Response to audism

Asking Change dot org to avoid endorsing less than optimal language, and even asking people to think about issues of culture and choice, does not equal "demonizing" anybody's parents. The sooner that conclusion-jump goes away, the better off we will all be.

a mother, who gets that when people teach me what it's like for kids who are not white, that is not the same thing as me being attacked/demonized/silenced etc.

Also, I'd like to say that as someone who is disabled, I am very much in a position to judge non-disabled parents for what they do to their disabled children. And it is my RESPONSIBILITY to speak up for the disabled child.

Thing is, when we point any parental decision, motivation or mentality out as being problematic, or even less than an absolute and indisputable truth, we get accused of "judging." And sometimes that, or even actual calling out and judging, needs to happen. Parents aren't universally perfect and benevolent by virtue of being parents.

Also, what someone chooses for themselves making an informed decision and what a person's parents or other relatives want and choose for them are two completely different things, especially when it's stuff that isn't lifesaving or preserving existent functioning.

"parents are not benevolent because they are parents, and parenting decisions are not made in a vacuum separate of oppression. No disabled or Deaf person should be shamed or judged for their decisions, but able-bodied and hearing people can and should be. If you benefit from a system of oppression, the power is on your side, so it is not a 2-way street where everyone is equal. This culture of calling oppressed people "judgmental" for calling out stuff that upholds their own oppression is fucked up. Nondisabled people, even parents, get to be and should be called out on ableism. Also, calling people heroic just for existing as disabled people is hella creepy. Like, cool we don't get to have autonomy (get institutionalized), so being your inspiration is like what? our consolation prize?"

I am not Deaf and I don't think it would be right for me to speculate on what I would do. However, I am disabled, and on that level, I can say that my body is complex and I am more interested in a world that respects that than a cure. Deaf and disabled get to decide what they want for their bodies.

Science and what is pursued under the rubric of science is influenced by social norms and beliefs.

Science also does not exist in a vacuum, and science has been used to hurt and kill marginalized people, such as scientific racism and eugenics. Again, maybe folks should defer to Deaf people on this issue.

A parent telling their child that the child needs to go through surgery to be accepted/acceptable, rather than fighting for their child against an unaccepting society, can hurt like hell.

Instead of empowerment there is the constant need to feel like you have to be fixed.

medical vs social: deaf

There are several important points to consider here that I think you are completely missing. 

1.) Most doctors and most parents are operating within a framework that already medicalizes and pathologizes biological, physical, and mental differences and deviations that do not need to be medicalized and pathologized. While any individual doctors and parents can be perfectly well-intentioned (and I will be quite generous in extending this benefit of the doubt to "most" doctors and parents, as, make no mistake, there ARE abusive parents and doctors), this does not mean that their decisions, ideas, and attitudes are free of social context. For example, a father who is a member of the Ku Klux Klan might not be physically or emotionally abusive to his children, and may in fact be otherwise a very good parent, but if he decides to indoctrinate his children in racist ideas, keep his children in segregated schools or homeschool groups, he most likely believes very strongly that this is in his child's best interests, but his decisions are most certainly informed by his racism. 

Likewise, parents choosing forced medical procedures for their children on the assumption that their quality of life will or must necessarily be better if their bodies or brains functioned in the same was as most people's may very well have the best of intentions and believe that they are doing what is best for their children, but it does not in any way detract from the fundamentally ableist and audist attitudes that are pervasive in U.S. society, which is the context in which these parents are making those decisions. 

2.) The presumption that to be hearing must automatically be better or worthwhile or valuable than to be deaf, hard of hearing, or otherwise "hearing impaired" (a phrase I've heard some people use), is one that is profoundly audist and ableist, because it completely ignores and denies the real, lived experiences of many thousands (millions?) of d/Deaf people around the world. The Deaf people that are in this thread, and those who have written very eloquently on these issues, would argue very much that their lives and experiences are valuable and worthwhile, and certainly not lesser or diminished by virtue of deafness. 

3.) If you were then to argue that those people are simply biased by personal experience, can you then argue that the "doctors and parents" who oppose Deaf rights, disability rights, etc. are not biased by personal experience? This goes to the question of sociological privilege. Those who are privileged by being hearing, temporarily able-bodied, and neurotypical are also privileged in that their opinions and experiences are not merely centered as normative, but presumed to be objective and detached from personal biases. Conversely, those who are marginalized, who are deaf and disabled, are presumed to be utterly subjective (and not even truly capable of holding a "rational" opinion or thought to begin with at worst) and always tied to personal biases that de-legitimize and invalidate those opinions and experiences.-Lydia

Cochlear Implant

" Why would you trust the doctors and the parents over the experience and perspective of people with disabilities? Is it an attachment to the soothing prescriptive nature of the medical institution? These comments endorsing the implant for the child demonstrate a willingness to accept this prescription based on fears of deaf and preference for hearing. Cochlear implants do not restore hearing, they do not always work, there is no guarantee the child will learn speech and language, and these parents are saying they will use an auditory verbal therapy approach- which excludes sign language. 

Also- this child has auditory neuropathy, not cochlea hearing issues. Implanting AN children is experimental at this time. How many of you have consoled friends with failed CIs? Taught students with failed CIs, watched them fearfully be pressured into surgeries? Watch students with failed CIs, side effects, language delays and other issues come into the classroom? 

You can trust the ableist institution of medical treatment- but some of us are cleaning up after it and do not appreciate being disrespected here."-Julia

ASL vs. English: What the F...?

I don't see why you can't use ASL and then use spoken/written English at separate times?

All ASL-English bilingual schools I know (only 4 or 5 out there in the entire country!) provide instructions in both ASL and English for all subjects (not sim-com). They also provide intensive speech trainings too. Those who had access to ASL from birth are more likely to have better speaking and listening skills than those who were raised orally and joined our school at an older age.

Again, I'm sharing based on my collective knowledge and experiences... I come from 4 generations of Deaf families, and all of my family members were/are educators. My parents both were raised orally in educational settings (all schools banned sign language in the 1950s and 1960s). My grandfather deliberately brought in sign language to classrooms by inventing the total communication philosophy in the 1970s. My grandmother was on the SEE committee, and developed SEE along with other prominent Deaf members. Deaf people throughout the history have always tried and tried different approaches to help Deaf children acquire English. Deaf people never rejected spoken or written languages, and have always valued English in our lives. We only ask hearing people to recognize the importance of ASL. Every time I talk about ASL, people (including my classmates here) are quick to defend English. Where did I say English was not important? Where did I say English should be omitted from our lives? Are people here feeling threatened by the notion that we should value ASL? Why shouldn't we value ASL when it's the ONLY language that is 100%, not 99% or 98%, 100% accessible to Deaf babies.

Deaf people have always tried and tried to come up with the best, natural, and holistic approaches to teach Deaf children English. When we see that the approaches do not work, we simply try different ones. Hearing people always ride off our OLD and OUTDATED ideas and refuse to follow our lead on the NEW, UPDATED, and more effective ones.

In the past twenty years, Deaf educators and intellectuals have found many promising results in the path of ASL-English bilingualism. We are very excited about that because with this approach, ASL actually supports English acquisition in all forms (reading, writing, and speaking). This is actually an all inclusive approach! Yet, we are constantly being framed as the ones who refuse to give parents "choices," who are militants, who are advocating for an "ASL only" route (there was never an ASL-only route, ever), and all the false and ugly labels. In contrast, the oral advocates are framed as the ones who are giving the parents choice while the oral route is nowhere close to being inclusive and is actually a route of taking risks and chances for most Deaf babies.

Anyway, my point here is... I'll say this again and again... be Deaf-centric in all Deaf-related affairs. :) Deaf people in the Deaf community interact with Deaf children, watch them grow into Deaf teenagers, and work with them as adults. We share the same community, attend the same events, have the same friends, co-workers, bosses, and so on. We are constantly exchanging experiences, thoughts, and ideas based on our educational experiences. We explicitly see patterns in what works and what does not. We are always evolving and improving in our best practices with educating Deaf children. However, one thing that remains throughout hundreds of years of documentation in the Deaf community... nobody has ever said, "I wish I didn't learn sign language."

Will He Have to Defend His Own Deaf Being?

Every time I look at my 4-year-old Deaf nephew, I wonder if the world will embrace him for who he is as a bilingual Deaf person. With all the negativity that surrounds the Deaf community at the moment, I still have hope that some day people will recognize the beauty of ASL and Deaf culture. No matter what parents choose for their Deaf children, every human being deserves to be respected and valued. I hope some day people will cease to perceive Deaf people as an inferior group, and see them as wonderful contributing members of the society. I really don't want this vicious cycle of fear and ignorance among hearing people to continue, and I don't want my nephew to grow up having to defend his own Deaf being. Am I being too hopeful?