Let people most affected by gene editing write CRISPR rules

Article: https://www.newscientist.com/article/2086548-let-people-most-affected-by-gene-editing-write-crispr-rules/

For those of us who don’t follow science news, the CRISPR/Cas9 system has been the recent buzz topic in research and ethical debates. Derived from a defense mechanism in bacteria, CRISPR is a system that allows for experiments that “cut out” certain parts of DNA and replace them with new sequences, which can be synthesized ahead of time in the lab. CRISPR is a breakthrough not only because of its efficiency, but because of its specificity – instead of having to culture a line of cells or mice over a series of generations with a specific mutation, CRISPR can go to the target gene in essentially one go.

(This article is a pretty good overview of how CRISPR works, for those who are interested: http://gizmodo.com/everything-you-need-to-know-about-crispr-the-new-tool-1702114381 )

Gene editing has a very broad variety of applications, as studies involving DNA can apply to almost any model system, from microbes to mice to humans. Most of the recent debate, including what is discussed in this article, has surrounded humans and the potential and ethicality of gene editing derived therapies. It comes down to the Gattaca questions of cure and the eugenic/medical model.

Gene editing therapies do have the potential to help people with genetic conditions that cause severe pain and/or are terminal. As the article points out, however, these people and others potentially affected by new therapies are not being included in the conversations surrounding CRISPR and its derivatives. Scientific research unsurprisingly tends to lean towards or be in outright support of the medical model. In my own time reading current various cell biology and clinical research, I’ve seen outdated language such as the r-slur still being used in titles of recent research journal articles. The scientific community needs to be listening to disabled people before they decide what kind of research serves their “best interests.”

The article also pointed out that the conversations and resulting therapies are also being limited geographically. Debates primarily discuss effects of CRISPR therapies on upper class white people who live in the US or Europe, despite the potential use for gene editing therapies for patients in poor areas of the world. For example, CRISPR could be used to change the genomes of populations of mosquitos carrying malaria, which according to the cdc is found in highest transmission rate in sub-saharan Africa and parts of Oceania.

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The Body Electric: Artists with Developmental Disorders Portray Sexuality

https://broadly.vice.com/en_us/article/the-body-electric-artists-with-developmental-disorders-portray-sexuality

In “The Body Electric: Artists with Developmental Disorders Portray Sexuality,” artist and writer Jayinee Basu covers the visual art of Camille Holvoet and Thanh Diep, two multi-media visual artists with developmental disabilities whose work address the intersections of disability and sexuality and dispel the common perception that people with disabilities are asexual. Holvoet, who works mostly on paper, has a self-portrait series that incorporates text to explore desire and energy, a reflection of an internal world. Diep has a video, entitled “Nature of Pleasure,” in which she frankly and openly discusses her experiences, hopes, and fears regarding sexuality and romantic relationships over footage of couples interacting physically.
The author discusses the experience of viewing this art as someone without a developmental disability, saying that it allows the viewer to enter into the world of the creator in a way that is impossible through other, more traditional mediums. I couldn’t agree more. This ties back to the different approaches of making things accessible we looked at earlier in the semester, with a holistic approach being the most successful. We need to explore alternate forms of communication and ways of understanding each other. Being bound up by tradition and trying to create a “one-size-fits-all” way of communicating is ultimately unsuccessful and keeps us separate. Creating and looking at art is one way in which we can all begin to understand each other and build a strong community.

Sexual Education and Intellectual Disabilities

This article talks about the lack of access to sexual education for people with disabilities, especially intellectual disabilities. Of course, sexual education classes in the US are already generally abstinence only, not scientifically correct, and only talk about heterosexual penis and vagina sex, but even these subpar sexual education classes are often inaccessible for people with intellectual disabilities for a variety of reasons (their parents may opt them out or it might be taught as part of a gym class that they do not attend, for example). It is also often assumed that parents will take care of any sexual education, and many parents are afraid that they will do an inadequate job or are simply unwilling to see their children as sexual beings in the first place. This is of course exacerbated in the cases of parents who already infantilize their disabled children.

Another aspect of sexual education that the article highlights is a lack of discussion about sexuality. The article mentions the case of one woman who identifies as asexual and for a long time struggled to determine if her asexuality was caused by her autism or not (she eventually determined that it wasn’t). In this way, the assumption that all disabled people are asexual is harmful not only to those who are not asexual but also those who are, because asexual people with disabilities can be assumed by others to be misinformed or brainwashed about their own sexuality or feel shame for inadvertently validating the assumption that disabled people are not sexual. Needless to say, figuring out your sexuality is often a really difficult process, but it is much more difficult when you are not given access to sexual information. Not only is this dangerous for medical reasons, but it can also be emotionally harmful, especially if your sexuality is not normative. And, as in the case of the woman in the article, disability and non-normative sexuality can be thought of related or causal, especially when the person is also marginalized for other aspects of their identity.

I also read an old, fairly bad article that mostly focuses on parents of adults with developmental disabilities who receive sexual education. In this article, sexual education for people with intellectual and developmental disabilities is framed not as a logical process but instead as a necessary evil (“if you hide from this issue, it will come back to haunt you”). This attitude is patronizing and unfortunately it reflects the stigmatization of sexual education in general. Notably, our society thinks of sexual education as instructing people how to have sex (which is true, and which it definitely an important part) but this is not all sexual education can do. For example, in the Netherlands, where comprehensive sexual education starts when children are four years old, people learn not just about sex but also about love, body image, having healthy relationships, sexuality, and consent. Considering that people with disabilities are much more likely to be victims of abuse, such a comprehensive sex education would especially be of use to people with intellectual and developmental disabilities because it would better equip them to talk about their boundaries and advocate for themselves when they have been abused rather than being left to contemplate isolation and shame on their own. And, of course, it would help them have safer sexual freedom. Clearly, we need to change the way we think about, structure, and use sexual education in the United States.

Disabled Models in Advertising

Article: As big brands begin to embrace diversity – being different never looked so normal

Read more: http://metro.co.uk/2016/04/23/as-big-brands-begin-to-embrace-diversity-being-different-never-looked-so-normal-5800133/#ixzz47FHF13S0

Having diverse representation in the media is incredibly important, especially in this society that prioritizes a very specific ideal person (that is, a white cisgendered heterosexual able bodied male). However when “representation” comes in conjunction with advertising, you have to wonder how much of a distinction to make between a success for a certain minority group and pandering.

In the article “As big brands begin to embrace diversity – being different never looked so normal,” the author cites companies who use disabled models in their campaigns as “at work to revolutionise the way we think about ourselves by embracing diversity.” The article goes on to show several recent examples of disabled models and models of other marginalized identities in advertising campaigns.

I have two main problems with this idea as advertising campaigns being used as examples of inclusivity in this article:

1. The idea that companies make advertisements with a goal of making positive change in society rather than to sell their products. Companies want to sell products, and if it seems like making a “progressive” advertisement will sell more products, they will do so. How many of the companies on the list in this article also went on to make more inclusive policies for their workers? How many have factories with disabling conditions? I’m not saying that disabled models and actors should not be used, but I think the statement that companies are “at work to revolutionise the way we think” is unfounded.

2. The lumping together of images that portray disabled models as “inspirational” as equally “progressive”to other kinds of campaigns.  As we have talked about several times in class, having disabled people serve as “inspiration” is not only objectifying, but ultimately does nothing to challenge ableist standards of normality.
I’m glad to see disabled models being successful in their work. I wish though, that we weren’t so quick to congratulate companies as progressive when they really continue to function in the neoliberal capitalist framework that oppresses those same models.

Meet the Instagram Stars of the Down Syndrome Community

https://broadly.vice.com/en_us/article/meet-the-instagram-stars-of-the-down-syndrome-community

“Meet the Instagram Stars of the Down Syndrome Community,” written by Emalie Marthe for Broadly, brings up interesting questions about representation and activism. The article describes a few individuals with Down syndrome who are featured on social media, either on their own accord or by friends and family, and have gained worldwide attention and large fanbases.

Some of the accounts and the way they are discussed seem problematic. Many (able-bodied) interviewees mention something along the lines of feeling inspired by those featured in the Instagram accounts. The accounts featured in this article function positively in many ways, but there is a danger of them serving as “inspiration porn” for able-bodied people. What is positive representation and what is exploitation? One mother, who runs an Instagram dedicated to her young son with Down syndrome says that she hopes the account will be educational to others, citing the online presence of other parents of children with Down syndrome being beneficial to her. I don’t want to discount the power of online community, but I can’t help but think of the kid, who is likely unaware of his “inspirational” presence on Instagram. Would he want to be the face of Down syndrome?

Many people discuss the importance of visibility and representation, which cannot be denied. In theory, Instagram is a platform through which people can control their own image and how they are presented, sometimes to millions of people. This makes it a powerful tool in terms of activism. Giving people with disabilities (or any other marginalized identities, for that matter) access to a platform through which to discuss their lived realities and have their voices heard is definitely a positive thing. Even if it’s an unconventional medium, sharing narratives is activism.

I Looked at my Body and Said Yes: Where Disability and Style Meet

http://www.autostraddle.com/i-looked-at-my-body-and-said-yes-where-disability-and-style-meet-326851/

Autostraddle author Carrie writes about finding her comfort zone with fashion and fighting the expectation to be femme and dress impeccably to hide her disability. Her experiences with having a physical disability and trying to prove that she is still capable/desirable are unique to her disability, but can also be relevant for people with other disabilities, visible or not. Clothes mean something else when your body exists outside the ‘norm’. If you wear sweatpants all the time because you’re tired, or if you wear loose-fitting clothes because of IBS or no bra for back pain, those choices (and they’re not even really choices) further reflect your disability. Each day when I get dressed I have to consider not only how my outfit will reflect my gender identity/presentation, but how it will reflect my chronic illness. Like Carrie talks about in her article, I feel the need to dress up, wear makeup, be “stylish” to prove that I am still fully functioning and not lazy, that I haven’t given up. These markers are much more assumed when others know or can see your disability. Finding clothes that make you feel comfortable in public and private is made even more difficult with the added expectations put on you as a disabled person in society. As Carrie says, accurately:

Being a disabled woman often feels like choosing between these life paths:

  1. Object of Pity/Perpetual Child,
  2. Inspirational Overachiever,
  3. Fetish Toy, or
  4. Good Disabled Girl Who Makes Sure Everyone Likes Her.

The fact that articles like this are being posted on Autostraddle (and even some not ableist ones on Buzzfeed) is really exciting and important, and hopefully will mean that disability will continue to be considered not only by people within the disability community, but in other socially aware, for lack of a better word, communities as well.