Showing posts with label Disability. Show all posts
Showing posts with label Disability. Show all posts

June 15, 2018

Sound or Silence? The Pros and Cons of Cochlear Implants

Cochlear implants (CI) have been in use for several decades, yet there is still an active controversy surrounding these devices. While some people strongly advocate for the positive effect on an individual’s life, others claim that implants are dangerous both to individual health and to deaf culture at large [1].

PRO
Even though a CI cannot provide 100% hearing capability, it enables the individual to hear and understand most sounds. A cochlear implant does not amplify sounds like common external hearing aids, but stimulates the auditory nerve. The implant essentially replaces the function of the hair cells in the inner ear that usually register sound vibrations.  
Most importantly, a CI enables the individual to hear itself and thus learn to speak and articulate, and thus an implant helps to communicate with hearing people who do not know sign language. It also saves from  lip reading and generally depending on others for hearing help.
Another great advantage of having a CI for young people is that it can help them fully participate in mainstream schools and society, as well as broaden their career choices. While they may still be limited, the limitation won’t be as severe or as disabling as if they had no hearing choices available to them.
Being able to hear is also a measure of safety: the ability to locate sounds allows you to be more aware of perilous situations and hear impending danger such as a car coming from behind.

Blausen.com staff (2014). "Medical gallery of Blausen Medical 2014". WikiJournal of Medicine 1 (2). DOI:10.15347/wjm/2014.010. ISSN 2002-4436. - Own work, CC BY 3.0, https://commons.wikimedia.org/w/index.php?curid=29025007


CONTRA
CI require a surgical insertion and obviously surgery of itself always bears risks. Since the device has become available, risks have been minimized, however, complications may include occasional facial numbness or minor facial paralysis. Among individuals wearing a CI, there is also higher incidence of bacterial meningitis than for the general population. Thus an immunization is recommended. The body may also reject the implant, which could require removal or further surgery.
It is important to keep in mind that a CI doesn’t guarantee that a person will be able to hear and speak at a normal level. In some cases, the person with the implant can only hear some environmental sounds. Particularly for adults who receive the implant, electronic signals might not register fully and some hearing impairment may still occur. Also it is important to acknowledge that the auditory cortex is not used to process sound in the same way if a person has been deaf for a long time, so a CI wouldn't help much. 
Thus parents of hearing disabled children are urged  to make a decision as soon as possible for their child. Most people with an implant still need special help in learning to speak and in many cases they will still be stigmatized. Even though they can hear and speak, their hearing capabilities are not the same as a hearing person's [2]. Luckily, the devices are getting better and improved sound perception lets the wearer of CI integrate better into mainstream society.
Obviously, it takes time to get used to the implant and especially in the beginning, many need to get the CI reprogrammed according to their needs. Also, people with CI are limited on some physical activities, especially those involving contact with water, as this could damage the implant.

Controversy in Deaf Society
The primary controversy regarding CI concerns the definition of deafness as a disability. Recently journalist Enno Park gave a talk at the Berlin re:publica conference , where he spoke about his very personal view on the two (hearing and non-hearing) sides of society [3].
The medical community generally regards deafness as a disability that should be treated, and mainstream (hearing) society is of the opinion that hearing allows for a more fulfilling life. Meanwhile, many individuals who are deaf, as well as others who are familiar with non-hearing society feel that deafness is a cultural identity rather than a disability [4]. As a result, they feel that CI implies that there is something wrong with them that needs to be fixed, and that living as a person with a hearing impairment is inherently less fulfilling than as a "normal" person. Thus, these members of the community perceive putting something technical in their brains as serious affront.
Within the non-hearing community, there is a long history of disagreement: Some signing people feel that CI wearers are betraying their culture. Some even go as far as to describe implantation of children as “child abuse”. Also, with more people wearing CI, the need for sign-language interpreters decreases to the disadvantage of those who still rely on their services. On the other hand, parents that do not want their children implanted have to deal with hostility not only from the hearing community, but also from CI-wearers.




--> Get an idea how sound is perceived, through a CI! <--




Interestingly, the attitude towards sign language differs from country to country. In Germany and France, most people working in deaf education even don't speak sign language, and emphasis is placed on children learning to lip read [2,3]. In contrast, in the US, every police department should have one or more interpreters available on call [5]. It is likely that these attitudes and values will change over time, both with the rise of improving hearing technology and activism from within the deaf community.
The decision to receive a CI is a very personal one that should be considered with the help of a medical professional. Every parent with a hearing disabled child needs to decide for themselves what the best choice for their situation is.

Claudia Willmes
PhD Alumna, AG Eickholt / AG Schmitz

Background:
From 2007 to 2008 I worked at the Institute le Bruckhof in Strasbourg, France -  an institution for hearing disabled children, where many children wore cochlear implants [6]. They received special training in learning language and were encouraged to read lips instead of using sign language. However, I also took classes in an adult education center to learn DGS (German sign language) for one year and attended the university in Strasbourg to learn LSF (French sign language). Thus, I heard opinions from all sides: the hearing, the hearing disabled and signing, and those wearing CI.

[1] www.nad.org
[2] personal communication
[3] talk by Enno Park https://bit.ly/2K3MO8P
[4] Ohio University, The Institute for Applied & Professional Ethics https://bit.ly/2wxdrBg
[5] U.S. Department of Justice  https://www.ada.gov/q%26a_law.htm
[6] www.bruckhof.org/
 

Like what you see? Interested in contributing? We are always looking for new authors and submission on anything related to the topic of (neuro)science. Pitch us an article, or send us some beautiful shots from your microscope, poems to claudia.willmes@charite.de!  


March 18, 2017

Barrier-Free Science: Designing a Smarter Lab?


Low wages, strange hours, the pressure to publish or perish… There are many barriers that prevent people from pursuing careers in science, and one can hardly blame them. However, there are some types of barriers that should never prevent a person from being a scientist. This article will discuss legal and design-based strategies that help make traditional laboratory environments accessible for everyone.

In Germany, many people will be familiar with the term “Barrierefrei”, which refers to the design of spaces to accommodate individuals with physical or intellectual disabilities. This policy is enshrined in German federal law for all workspaces, with other special laws concerning areas such as air travel or public transit [1]. The most obvious examples are the availability of wheelchair ramps or elevators for those with mobility issues, but the law actually extends to a lot more subtle adjustments. For example, there is a special emphasis on communications design, for example, labels that contain large print or Braille for the visually impaired [1].

Open and Inclusive Design
Much of the philosophy of building in this way comes from the Universal Design movement, first described by the architect Ronald R. Mace in the 1960s. This movement, and the closely related Design for All, promotes the creation of spaces that are useable for as many individuals as possible, irrespective of their age or ability [2]. Despite this one-size-fits-all principle, special thought is also put into creating designs for adaptive/assistive technology that is also aesthetically pleasing, flexible in use, and that has a high error tolerance.


BARRIER-FREE MEANS MORE THAN 
ELEVATORS AND RAMPS
 

How can we imagine a lab environment that embraces universal design? For Bradley Duerstock, director of the Institute of Accessible Science, biomedical engineer and wheelchair user, it’s all about flexibility and communication. For “hands-on” experience in a lab, it’s critical to have a PI who is willing to engage with their student or employee with a disability and understand their needs [3]. Some fixes may be relatively simple, for example, using different high-contrast dye and special lighting to help an individual with a vision impairment perform and analyze Western Blots. Duerstock himself invented one of the first microscopes that allows the user to operate all controls through a computer interface rather than manipulating small knobs.
However, some aspects of the lab environment are more difficult to change. While legislation mandates that workspaces need to comply with all employees’ needs, it can still be difficult to find funding to cover these costs [3,4,6]. Can a lab be retrofitted with new lab benches or lowered sinks? What about more basic safety concerns, such as accessibility of fire extinguishers or eye wash stations? How about a fire alarm that incorporates visual, as well as auditory cues? Unfortunately, the Universally Designed lab still seems to be far away.

Image source: Tony Webster, Wikimedia Commons

Challenges and Progress
A quick look at my own workspace, the brand new and tremendously expensive [5] Charité Cross Over building reveals a number of shortcomings limiting the labs’ use for individuals with disabilities. Between electrical and gas outlets at ceiling level, heavy doors with impractical handles and a literal barrier that one has to climb over to enter the animal facility, it is clear that accessibility was not the architects’ first priority.
It is well documented that individuals with disabilities are less likely to be employed than their non-disabled counterparts, but it seems that some progress in STEM professions is being made. For example, a 2014 report from King’s College London found that the number of undergraduates in STEM with a self-reported disability has increased by 70% since 2010 [6]. The report credits this increase to programs that provide government funding to help students gain access to support such as assistive technology and sign language interpreters. Money works, but gains for graduate students and full-time STEM professionals in the report were far more modest. How much can be credited to a time lag, and how much to the sometimes inflexible nature of hands-on lab research?

Thinking Barrierefrei
We cannot renovate and retrofit the entire Charité overnight, but the first step to building a barrierefrei scientific community is simple awareness of the space around us. Next time you go about your daily work in the lab, think about how the design of your tools and space influences the way that you do science. What sorts of barriers, both tangible and intangible could conceivably exist, and what can you do about them? Use your scientific imagination and do some problem-solving. Design matters, especially for purposes of inclusion and diversity.

BE AWARE OF THE SPACE AROUND YOU

Want to find out more about specific policies in place at Charité, or how you can get involved in re-thinking scientific spaces? Be sure to check out the Office for Individuals with Disabilities (Gesamtschwerverhindertenvertretung) [7]!

by Constance Holman, PhD Student AG Schmitz

[1] http://bit.ly/2kgKSR1
[2] http://bit.ly/1PCAyL8
[3] http://bit.ly/2jHPmfY
[4] Brown, Nature, 2016
[5] http://bit.ly/2kEsyxR
[6] http://bit.ly/2kgAUPO
[7] http://bit.ly/2kBWxHm