Author: Turnip Friend

A Disability Studies Analysis of Autism Speaks

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Artist’s Statement:

The results of the research I conducted for this piece was far more shocking than I ever expected when I sat down to write it. Before looking into the organization Autism Speaks’ rhetoric and representation of autistic people on their website, I knew there would be issues. Autistic communities everywhere denounce this organization as a hate group but I did not realize how sinister their practices really were until I began to analyze their positions through a disability studies lens. As an autistic individual myself, I have a tendency to miss subtext and take the words of people and organizations at face value. What I found is that Autism Speaks wants people to take their word at face value and assign them authority over how autistic people need to be treated. However, because much of my piece is snapshots of tweets from autistic individuals around the country who have been hurt by their practices, my hope is that those who interact with Autism Speaks will begin to see through their façade of supposedly compassionate practices which hide their radical commitment to eugenicist ideology. One of the issues I’ve found with academic research is the lack of colloquial jargon that would allow everyday people to access the information presented. This is why my inclusion of these tweets from autistic people are so central to this piece, because when disability studies can be learned about and understood in familiar terms, it can then also reach far more people than it would have otherwise.

A Disability Studies Analysis of Autism Speaks

by Rachael Howson

The organization Autism Speaks was “founded in 2005 by Bob and Suzanne Wright after their grandson was diagnosed with autism” (Henkel). When considering these details about the origins of this institution, it makes sense that today none of the board of directors of this advocacy group are autistic, with nearly all of them either having family members who are autistic, or have no publicly recognized association with individual autistic people outside of those they market treatments and services to. This distinction is important because through the creation of their advocacy group, they centered the perspectives of neurotypical people, or non-autistic people in their advocacy instead of centering it around the voiced needs of autistic people themselves. Naturally, because the board of directors have no personal experience with autism, the aspect of their mission that states that they want to “increase understanding and acceptance of people with autism” in the world is unqualified because they themselves do not understand and accept autism in the way advocacy groups formed by autistic individuals do (Our).

This aspect of the organization’s leadership is no coincidence nor simply a byproduct of its origins. In fact, the career section of the Autism Speaks website clearly defines the organizations workplace culture and a specific list of “five core competencies” expected of employees if they are to contribute to the organization. These competencies include, building collaborative relationships, professional behavior, results driven, customer orientation, and flexibility. While characteristics might seem like easy to embody characteristics to non-autistic people, the organization is pointedly excluding autistic people who among other criteria are usually characterized as having social deficits including communication, lack of eye contact, “difficulty reading facial expressions and body language, difficulty understanding the rules of conversation” and group dynamics among others (Common). Likewise, autistic people are known for cognitive rigidity which presents as literal and absolute thinking, black and white expectations, “rules with little interpretive room, and a preference for predictability” and strict routine (Cognitive). As an organization that claims to strive to help autistic people, they should be one of the most autistic-friendly environments for autistics to work in. However these requirements are blatantly anti-autistic and exhibit the same ableist practices that these autistic twitter users describe as inaccessible work environments in a thread about having to choose to leave or losing a job due to a workplace that was not autistic-friendly:

ALT: Tweet from @17shadesofpurple “I lost two jobs that I was fantastic at. I was told flat out that I wasn’t a good fit “socially” and they had to weigh that against my top performance. Guess what won. Both times.”

ALT: Tweet from @Beczabu “Can’t handle the constant noise and rowdiness of co-workers. Makes me want to run and hide. And they seem to love making me feel bad about myself.”

ALT: Tweet from @pippa_louise “Yep. More than 18 jobs in 11 years and it’s impossible for me to work as I never last more than 3 months. For me it’s a lot of things that overload me but mainly social relationships I struggle massively with x.”

Along with their workplace intolerance for autistic people, another key facet that sets Autism Speaks apart from effective autistic led organizations is that they adhere strictly to the medical model of disability. The medical model sees disabilities as a defect within an individual’s body or mind that can be diminished or corrected through medical intervention, and emphasizes the importance of treatments and intervention for autistic people so as to address the “specific needs of each individual.” This is shown from their use of the smallest objectionable choices like the organization’s use of the phrase “people with autism,” to their larger offenses such as their unrelenting support of ABA therapy, which has been proven to cause PTSD in autistic people. The non-profit organization and publication “NeuroClastic,” which supports autistic people and their families through cataloguing “the experiences, insights, knowledge, talents and creative pursuits of autistics,” has stated publicly that Autism Speaks is a hate group (Bettin):

ALT: Tweet from NeuroClastic “Autism Speaks is a hate group. They have done and continue to do irreplaceable harm. They know the statistics about autistic suicide rates. They don’t care. They’re still pushing autistic conversion therapy which contributes to devastatingly high autistic suicide rates.”

When considering Autism Speaks’ use of the phrase “people with autism,” understanding that person-first language is a “linguistic prescription which puts a person before a diagnosis” and is “intended to avoid marginalization or dehumanization when discussing people with a chronic illness or disability”  is essential (Person). In many situations when referring to people with disabilities, person-first language is seen as the preferred etiquette in order to show respect to the humanity of those being referred to. Therefore, many would believe that this convention should also apply to autistic individuals. However, disability first language, which is in direct opposition to person-first language, is widely seen in the autistic community to be preferable. This is despite person-first proponents’ claims that ingrained ableism often leads to people seeing a person’s disability before their humanness, which is why person-first language is necessary. Autism Speaks abides by the person-first perspective despite the widespread agreement from the autistic community that “Autism is not an appendage…. autism is a way of being,” which Jim Sinclair states in his piece, Don’t Mourn for Us. Therefore the idea that autism is “an alternative neurology which reflects humanity’s natural neurological diversity, not as a mental disorder” leads to the conclusion that autism shouldn’t be described as something that a person has (Howard). Autism Speaks’ language implies that autism can be separated from the individual despite public backlash, which directly aligns with their ultimate goal of teaching autistic people how to be neurotypical in order to find “solutions” for their autism, under the guise of helping them “reach their full potential” (About). It should also be noted that their use of the term “solutions” only appeared in their mission statement in 2016, after public pressure to remove the word “cure” from their vocabulary regarding autism. 

Expanding upon Autism Speaks’ perspective on “solutions” for autism, their statement that “Autism Speaks’…. public service advertising campaign stresses the importance of recognizing the early signs of autism and seeking early intervention services” and “Appropriate screening can determine whether a child is at risk for autism as young as one year”  is particularly revealing of their commitment to the medical model of disability (Learn). This framing of autism as something that must be stopped in its tracks lest it overcome the “normal child hidden behind” their disorder shows the organization’s lack of awareness of how the autistic community advocates for the wider culture to understand and treat them (Sinclair). Under the organization’s section labeled “Learn the Signs of Autism,” they has a list of qualities that indicate autism in children of all ages including but not limited to “loss of previously acquired speech, babbling, or social skills,” “unusual and intense reactions to sounds, smells, tastes, textures, lights, and/or colors,” “restricted interests,” “avoidance of eye contact,” and “resistance to minor changes in routine or surrounding” (Learn). When describing autism through the medical model of disability, these kinds of negative traits come to the forefront as necessary for making a diagnosis because the medical model requires “deviation from the norm” as qualification for disability. However, if organizations like Autism Speaks wanted to actually improve the lives of autistic people, they would take inspiration from groups like “NeuroClassic” which work to adapt the social model of disability to neurodivergent labels instead of researching how best to mold them into caricatures of “normal people.” The social model functions on the idea that “the problem is not in the child and their impairment, but in the social and attitudinal barriers” produced and enforced by the society in which they live (Social). As explained by “Brooke Winters” on twitter, disability does not lie within the individual, but within the environment.

ALT: Tweet from @brookewinters23 “The social model of disability defines being disabled as something that happens when accommodations aren’t made and environments aren’t accessible. Autistic people are not disabled by autism. We are disabled by an inaccessible world. Autism is not a disorder.”

As an example of their adherence to the medical model is the organization’s research goals. Under their Research Programs section of the website, Autism Speaks lists these goals, the top one being “seek the causes and types of autism.” Underneath this, they highlight the database called MSSNG (pronounced as “missing”) that was created as a collaboration between Autism Speaks, Google, and the research community “to create the world’s largest genomic database on autism” (MSSNG). This database holds the genetic information donated by over ten thousand people and families “affected by autism.” Autism Speaks’ reasoning for creating this collaborative project is “to speed the development of more effective and personalized interventions for autism and its associated health conditions” (Hand). This approach of Autism researching how genetic intervention could be utilized in the future once research by MSSNG has enough evidence of specific autistic genes is highly reminiscent of the United States’ history of involuntary sterilization of disabled people pushed by the eugenics movement which acquired considerable momentum in the early 1900’s. While Autism Speaks has stated that they do not support eugenics, with no further elaboration, it should be noted that eugenics is defined as “a set of beliefs and practices that aim to improve the genetic quality of a human population” (Eugenics). Instead of sterilizing autistic people, they are using the donated genetic information to uncover the genetic causes of autism so that they may be edited or eliminated as a form of “intervention.” This goal of identifying autistic genes would also be used by parents to select embryos without the genes as put forward by Doctor Diana S. Fleischman, a psychologist and professor at the University of New Mexico whose field of study include the study of disgust, human sexuality, and hormones and behavior. It is the view of Doctor Fleishchman and many of the other researchers that fighting neurodivergence at its root rather than having to treat autistic people after they are born is a more effective solution, by removing neurodivergence from the gene pool as described by “myk says ho ho ho” on twitter. 

ALT: Tweet from @mykola “Apparently people are down with removing adhd from the gene pool. You can bet how this person and her followers might feel about autism. This is why google’s MSSNG project is so awful, because these fuckers would really do it.”

In response to tweet from @sentientist “Say, for the sake of argument, that Lisa has a form of attention deficit that has a specific genetic basis. She struggles to focus for long periods. Lisa does IVF and chooses and embryo that doesn’t have this genetic deficit to implant. What do you think of what Lisa did?”

However, the autistic community widely recognizes this as a form of genocide particularly because autism is becoming more commonly understood to be a “‘neurological culture group’ than a social disorder or a disability” as stated by “Autvntg” on twitter:

ALT: Tweet from @autvntg “I am of the opinion that…. it is more useful to view autism as a sort of neurological cultural group than as a social disorder or a disability. Autism, cures, genocide.”

The term “genocide” usually refers to the destruction of an ethnic, national, religious, or racial group. However, the destruction of disabled people have always been a key feature of genocides targeted towards these listed types of group. For example, during the Third Reich, Austrian pediatrician Hans Asperger who studied autism and eventually had “Asperger’s Syndrome” named after him was crucial part in the genocide of autistic individuals during the Nazi Regime. His job was essentially to sort the autistics into two groups, the intelligent and useful one who would be later classified as having Asperger’s Syndrome, and the others autistics who were considered genetically inferior because they were unable to perform labor or were seen as incapable of social conformity, and so were referred by the doctor to Vienna’s Am Spiegelgrund clinic which was a center for child euthanasia. “Asperger supported the Nazi goal of eliminating children who could not fit in with the Volk: The facist ideal of a homogeneous Aryan people” (Baron-Cohen). Partially because of his Nazi affiliations and recent studies that reject the differentiation between Asperger and Autism, members of the autistic community on twitter such as “Ghost of Bumplings Past” beg that the wider community stops using the term Aspergers. While Autism Speaks’ no longer uses this term to describe any of the individuals they treat because of public pushback, it should also be remarked that the differentiation is no longer useful to the organization. Now that they have the ability to receive genetic information from donors, they no longer need to rely solely on research recorded during in person medical evaluation post-birth, to decide whether the autistic individuals’ families would be better off without them as Hans Asperger did. 

ALT: Tweet from @Not_CharLatte “reminder that the Autistic community is begging you to stop using the term Aspergers. Hans Asperger was a Nazi who experimented on Autistic children. Aspergers because the term for folks on the spectrum who were able to work and therefore “didn’t deserve to immediately die.”

In regards to an ever growing autistic community whose collective neurotype is considered worthy of destruction by this more potent form of eugenics, an understanding that a culture is defined by “the behaviors and beliefs, characteristics of a particular group of people” becomes especially important as Autism Speaks continues to push their belief that environments do not need to be changed to increase accessibility, but instead that autistic people need to change in order to fit their environment more effectively. Their primary tactic for spreading this belief is through their preferred treatment called Applied Behavior Analysis or ABA therapy, which is on the top of Autism Speaks’ list in their treatments and interventions section of the website.   

Therapy can be defined as either “the treatment of a disease or disorders, as by some remedial, rehabilitative, or curative process” or as “any act, hobby, task, program, etc. that relieves tension.” These two definitions are important because what the autistic community refers to as “stimming” refers to “self-stimulating behaviors, usually involving repetitive movements or sounds” is widely proven to be a “protective response to overstimulation, in which people calm themselves to block less predictable environmental stimuli” (Stimming). Stimming therefore, is a form of therapy, and yet Autism Speaks’ promotes a type of therapy more akin to conversion therapy to correct this naturally therapeutic behavior exhibited by autistic people because it is seen as abnormal behavior. When autistic people are not allowed to stim, which is an essential emotional regulatory tool for many autistic, oftentimes internal tension builds until the individuals are forced to relieve said tension through other less healthy means such as self-harming or depersonalization as described by twitter user “Alice (ae/aem)” in response to their experience with ABA abuse where their adopter refused to allow them to engage with any stimuli that lead to the performance of autistic traits:

ALT: Tweet from @TheHorrorOf97 “My adopter was a psychologist. He took my most compelling things away. Music. Toys. All to try and force behavioral changes. What happened? I started to develop sever depersonalization and started self harming cuz I was using toys and music to stim, and they were seen as fun.”

ABA Therapy has been widely documented as harmful to autistic people because it teaches them to “hide sensory pain, and increases the likelihood of PTSD and suicidality in autistic people.” The goal of ABA therapy is to decrease problem behaviors, and increase desired behaviors through positive reinforcement whereby approved behaviors are encouraged by offering a reward as a stimulus. As stated by “art twink” on twitter, this form of therapy leads to immense guilt in individuals when they care for their needs without first doing something deserving of a reward:

ALT: Tweet from @art_twink “You know what ABA gave me? Immense guilt every time I give myself a “reward” without completing a task first. And by rewards I mean things like going to the bathroom, eating, doing anything other than keeping my body Very Still.”

When compared to effective dog training tactics, it is clear that they “largely stem from the same principles- teaching children or dogs to behave in a desired manner” such as in the case of giving a dog a treat for sitting down or rolling over (Natasha). The only difference is that most dog training tactics recommend a person first remove the pet from the environment that is causing them stress, whereas ABA therapy forces autistic people to endure those environments and ignore the stress signals they produce, which often leads to autistic masking. This goal of teaching autistic people how to pretending to be neurotypical, or from the perspective of the therapist- having the autistic child understand how and why they must not act on their autistic traits- stems from the assumption that the “children simply won’t do things and need to be incentivized” rather than assume that “autistic kids can’t do what they’re asking them to do” or understand that “what they’re asking them to do is painful” (Why). As explained by twitter user “E”, this type of therapy is nothing more than a legal form of human obedience training.

ALT: Tweet from @QueerDeaf “#SayNoToABA because I was a DEAF child who had my HANDS taped together for stimming. You cannot convince me it isn’t abuse/all about controlling another human being to the fullest extent without consequences. #ActuallyAutistic #AutisticPrideMonth”

Part of the reason why ABA therapy is so widely used is because autistic traits are seen as unexplainable to neurotypicals, and therefore meaningless, though autistic people have written at length about the meanings and reasons for different autistic behaviors. This narrative that autism is an inherently mysterious, puzzling, and complex disorder is why the blue puzzle piece logo created by the Autism Society of America has lasted so long as a symbol for autism, which Autism Speaks continues to utilize. The puzzle piece is also representative of Autism Speaks’ commitment to searching for answers, or to find the key piece of the puzzle that will make autism make sense to non-autistics. Likewise, the color of the puzzle piece is indicative of the higher rates of diagnoses of male autistics than female autistics because the criteria for the diagnosis was based on how it appeared in males rather than how it presented in everyone on the gender spectrum which led to a gender bias which also led to the assumption that autistic males are considered “more autistic” than autistic females (Crosman). As explained by twitter user “Shelby James Champion,” even if the puzzle piece logo began as a albeit misguided way for neurotypical people to respect the complexity of autism and was used as a symbol for positive research, now that it is close to solely associated with Autism Speaks, the symbol is widely regarded as having no use to the autistic community because of its tainted history.

ALT: Tweet from @shelbyjchampion “The reason I passionately dislike the puzzle piece symbol is because it categorizes us as “mysterious” or “puzzling”. It is largely associated with the infamous organization Autism Speaks. I had a very bad experience growing up with that organization.”

With the immense levels of misrepresentation and ableist rhetoric about autism that Autism Speaks puts into the world, it becomes necessary to recognize who their intended audience is and why this audience has allowed the organization to receive millions of dollars in donation every year. This specific audience which is widely discussed in autistic circles are the so-called “Autism Martyr Mommies” who present themselves as victims or celebrate themselves for being able to raise an autistic child who are regularly described as far much more difficult to raise than non-autistic children. While Autism Speaks also advertises to other groups of people for financial support, the community support created by mothers of children with autism through message boards, clubs, and social media groups is unparalleled. This demographic is useful to cater to because mothers traditionally expected to be the parent who deals with the medical matters of their children and has the most concern for their health, safety, and wellbeing. Therefore when an organization like Autism Speaks recommends that parents scrutinize their children for seemingly concerning signs of autism such as “little to no warm, joyful, engaging expressions, little or no babbling, and little or no response to name,” which could present themselves as early as a few months old, these caring mothers react to the organizations’ fear-mongering just as the organization intends, by viewing Autism Speaks as the authority on how to best care for their disabled child. 

Likewise, this choice of audience leads to an overemphasis on the voices of caregivers in regards to the wellbeing and needs of disabled individuals as a whole which in turn gives the organization more authority as one of the the leading researchers into Autism Spectrum Disorder despite none of the organization’s board member’s being autistic, as mentioned earlier. Disability rhetoric is centered around who has power in conversations about disability, and just like with issues about race, class, gender, and other societal power dynamics, those who are in control of the narratives surrounding these issues are the ones who will be most able to exploit them and the marginalized groups whose voices are left behind. As twitter users “Liz Both Dinosaurs Bernstein” and “Ultra Violet Rae” explain, organizations who care more able the parents of autistic individuals than the autistic people themselves continually silence them despite their supposed goal of advocacy, which is more often than not a front for money-grabbing and eugenics propaganda.

ALT: Tweet from @yeralizard “Sooo many organizations and individuals that purport to advocate for autistic people yet continually silence us when we criticize them just prove more & more that they care more about autism martyr mommies than they do about us.”

ALT: Tweet from @UltVioletRae “Glob give me the patience to survive the autism mommies during the rest of autism month. The audacity. The victimhood. The eugenics. The torture as treatment. This month is supposed to be for us, yet they make $ for eugenics off our struggles, and silence us. Nauseating.”

In the faceoff against organizations like Autism Speaks, the question boils down to, how can communities center autistic voices in order to create accessibility within schools, workplaces as well as remove the veil of inaccurate, ableist rhetoric that surrounds conversations about autism. How can our world be changed so that autistic individuals are not harassed, abused, manipulated, and controlled by others on the basis of the way they function as a representative of their neurotype? How can the rhetoric that infantilizes autistic adults, assumes certain capabilities and a lack of other capabilities be changed so that neurotypical people respect autistics as much as they would other non-autistics? 

“Corvid Working on comms” says to stop lighting it up blue for Autism Acceptance month, and supporting organizations like Autism Speaks. 

ALT: Tweet from @corvidcactus “small doodle because today is #WorldAutismDay and #AutismAcceptanceMonth. I’m autistic. please do not “light it up blue” or support orgs like autism speaks. listen to and uplift autistic voices. acceptance is more important than awareness. #ActuallyAutistic”.

“Punny and Pup” says to stop supporting films and media that advertise unsafe methods of helping autistic people regulate themselves and do not try to educate yourself about autism through popular media.

ALT: Tweet from @pupkittyfan1: Sia’s film about autism is very dangerous, in the movie the autistic character is restrained and held down, this method is very dangerous and can harm Autistic ppl when they’re having a meltdown. Many Autistic ppl have spoken against this movie so please listen to our voices.”

As “Sarah Boon #StopTheShock” says, believe those around you who confide in you the possibility that they are autistic regardless of your level of understanding or awareness of the neurotype and their behavior. 

ALT: Tweet from @Saraheboon “Hi, I am an autistic woman (yes we exist). Autism is often misrepresented in the media dramatically, which was one of many reasons why I didn’t get diagnosed until 24. Please listen/empower autistic voices when it comes to representation.”

Lastly, as “Kyle” says, listen to the autistic individuals in your life and at all costs, do not speak over them.

ALT: Tweet from @TigerDropped “Good morning and happy #AutismAwarenessMonth. As someone on the autism spectrum who was diagnosed when I was 14, I send nothing but love & support to my fellow autistic people. Remember to listen to our voices & don’t speak over us. And daily reminder: fuck Autism Speaks.”

Works Cited

“About Us.” Autism Speaks, https://www.autismspeaks.org/about-us. 

Alice (TheHorrorOf97). “My adopter was a psychologist. He took my most compelling things away. Music. Toys. All to try and force behavioral changes. What happened? I started to develop severe depersonalization and started self harming cuz I was using toys and music to stim, and they were seen as “fun”. 1 May 2021, 23:44 UTC. Tweet

art twink (art_twink). “You know what ABA gave me? Immense guilt every time I give myself a “reward” without completing a task first. And by rewards I mean things like going to the bathroom, eating, doing anything other than keeping my body Very Still”. 4 Apr 2021, 14:03 UTC. Tweet 

Autvntg (autvntg). “I am of the opinion that … it is more useful to view autism as a sort of neurological culture group than as a social disorder or a disability.” Autism, cures, genocide”. Oct 9, 2018, 4:51 UTC. Tweet

Baron-Cohen, Simon. “The Truth about Hans Asperger’s Nazi Collusion.” Scientific American, Scientific American, 17 May 2018, https://www.scientificamerican.com/article/the-truth-about-hans-aspergers-nazi-collusion/. 

Bec J (Beczabu) “Can’t handle the constant noise and rowdiness of co-workers. Makes me want to run and hide. And they seem to love making me feel bad about myself”. Feb 18, 2018. 22:06 UTC. Tweet.

Bettin, Jorn, et al. “Neuroclastic.” NeuroClastic, 6 Dec. 2021, https://neuroclastic.com/. 

Brooke Winters (brookwinters33). “The social model of disability defines being disabled as something that happens when accommodations aren’t made and environments aren’t accessible. Autistic people are not disabled by autism. We are disabled by an inaccessible world. Autism is not a disorder”. Nov 16, 2017, 2:16 UTC. Tweet

“Cognitive Rigidity in Autism – Nurture Pods.” Nurture Pods Pte Ltd, 31 May 2019, https://www.nurturepods.com/cognitive-rigidity-in-autism/#:~:text=Some%20traits%20characteristic%20of%20the%20cognitive%20rigidity%20found,is%20welcome%20to%20the%20autistic%20child%2C%20even%20comforting. 

“Common Traits.” Autism Citizen, 9 May 2018, https://autismcitizen.org/autism-a-learners-guide/common-traits/. 

Corvid Working on comms (corvidcactus) “small doodle because today is #WorldAutismDay and #AutismAcceptanceMonth. I’m autistic. Please do not “light it up blue” or support orgs like autism speaks. Listen to and uplift autistic voices. Acceptance is more important than awareness. #ActuallyAutistic” Apr 2, 2021, 6:47 UTC. Tweet.

Crosman, Cassandra. “The ABLEIST History of the Puzzle Piece Symbol for Autism.” In the Loop About Neurodiversity, 1 Dec. 2019, https://intheloopaboutneurodiversity.wordpress.com/2019/03/20/the-ableist-history-of-the-puzzle-piece-symbol-for-autism/.

E (QueerDeaf). “#SayNoToABA because I was a DEAF child who had my HANDS taped together for stimming. You cannot convince me it isn’t abuse/all about controlling another human being to the fullest extent without consequences. #ActuallyAutistic #AutisticPrideMonth”. 5 Apr 2021, 5:53 UTC. Tweet

“Eugenics.” Wikipedia, Wikimedia Foundation, 6 Dec. 2021, https://en.wikipedia.org/wiki/Eugenics#:~:text=Many%20countries%20enacted%20various%20eugenics%20policies%2C%20including%3A%20genetic,or%20forced%20pregnancies%2C%20ultimately%20culminating%20in%20genocide.%20. 

Hand, Dr. Brittany, et al. “Research.” Autism Speaks, https://www.autismspeaks.org/research. 

Henkel, Dani, et al. “7 Reasons to Not Support Autism Speaks.” The Odyssey Online, 5 Aug. 2020, https://www.theodysseyonline.com/7-reasons-not-support-autism-speaks. 

Howard, Brian. “’Autistic Person’ and ‘Person with Autism’ Are Not One and the Same.” TheHill, 9 Nov. 2021, https://thehill.com/changing-america/opinion/580597-autistic-person-and-person-with-autism-are-not-one-and-the-same. 

Kyle (TigerDropped) “Good morning & happy #AutismAcceptanceMonth. As someone on the autism spectrum who was diagnosed when I was 14, I send nothing but love & support to my fellow autistic people. Remember to listen to our voices & don’t speak over us. And daily reminder: Fuck Autism Speaks”. Apr 1, 2021, 2:19 UTC. Tweet. 

“Learn the Signs of Autism.” Autism Speaks, https://www.autismspeaks.org/signs-autism. 

Liz Both Dinosaurs Bernstein (yeralizard) “Sooo many organizations and individuals that purport to advocate for autistic people yet continually silence us when we criticize them just prove more & more that they care more about autism martyr mommies than they do about us”. Feb 10, 2021, 7:50 UTC. Tweet.

MSSNG, https://research.mss.ng/. 

Myk says ho ho ho (mykola). “Apparently people are down with removing adhd from the gene pool. You can bet how this person and her followers might feel about autism. This is why google’s MSSNG project is so awful, because these fuckers would really do it”. Apr 8, 2021, 19:28 UTC. Tweet

Natasha, et al. “7-Step Formula to Easily Change Unwanted Dog Behavior.” The Online Dog Trainer, 30 Nov. 2021, https://theonlinedogtrainer.com/7-step-formula-to-easily-change-unwanted-dog-behavior/. 

NeuroClastic (NeuroClastic) “Autism Speaks is a hate group. They have done and continue to do irreplaceable harm. They know the statistics about autistic suicide rates. They don’t care. They’re still pushing autistic conversion therapy which contributes to devastatingly high autistic suicide rates”. 22 Nov 2021, 8:31 UTC. Tweet

“Our Mission.” Autism Speaks, https://www.autismspeaks.org/our-mission. 

“People-First Language.” Wikipedia, Wikimedia Foundation, 20 Nov. 2021, https://en.wikipedia.org/wiki/People-first_language. 

Pippa Louise Berry (pippa_louise) “Yep. More than 18 jobs in 11 years and it’s impossible for me to work as I never last more than 3 months. For me it’s a lot of things that overload me but mainly social relationships I struggle massively with x”. Feb 18, 2018, 9:03 UTC. Tweet.

Punny and Pup (pupkittyfan1) “Sia’s film about autism is very dangerous, in the movie the autistic character is restrained and held down, this method is very dangerous and can harm Autistic ppl when they’re having a meltdown. Many Autistic ppl have spoken against this move so please listen to our voices”. Jan 23, 2021, 10:02 UTC. Tweet. 

Sarah Boon #StopTheShock (Saraheboon) “As #ActuallyAutistic is trending…. Hi, I am an autistic woman (yes we exist). Autism is often misrepresented in the media dramatically, which was one of many reasons why I didn’t get diagnosed until 24. Please listen/empower autistic voices when it comes to representation”. Nov 20, 2020, 7:10 UTC. Tweet.

Siebers, Tobin. Disability Aesthetics. The University of Michigan Press, 2010. 

Sinclair, Jim. “Don’t Mourn for Us.” Don’t Mourn For Us, https://www.autreat.com/dont_mourn.html. 

Shelby James Champion (shelbyjchampion) “The reason I passionately dislike the puzzle piece symbol is because it categorizes us as “mysterious” or “puzzling”. It is largely associated with the infamous organization Autism Speaks. I had a very bad experience growing up with that organization”. 7 Apr 2021, 14:10 UTC. Tweet

“Social Model of Disability.” Social Model of Disability – an Overview | ScienceDirect Topics, https://www.sciencedirect.com/topics/medicine-and-dentistry/social-model-of-disability. 

Ultra Violet Rae (UltVioletRae) “Glob give me the patience to survive the autism mommies during the rest of autism month. The audacity. The victimhood. The eugenics. The torture as treatmetn. This month is supposed to be for us, yet they make $ for eugenics off our struggles, and silence us. Nauseating”. Apr 19, 2021, 7:54 UTC. Tweet. 

“Why ABA Therapy Is Harmful to Autistic People.” Autistic Science Person, 4 Nov. 2021, https://autisticscienceperson.com/why-aba-therapy-is-harmful-to-autistic-people/#:~:text=ABA%20therapy%20also%20rewards%20autistic%20children%20to%20hide,to%20poor%20mental%20health%20and%20even%20increased%20suicidality. 

17 shadesofpurple (17shadesofpurple). “I lost two jobs that I was fantastic at. I was told flat out that I wasn’t a good fit “socially” and they had to weigh that against my top performance. Guess what won. Both times”. Feb 18, 2018, 18:27 UTC. Tweet.

My Disability Studies Journey Through Learning and Acceptance

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One of the first quotes I commented on that affected me early into the quarter on September 27th was from the section of the O’Toole reading where the group is doing an exercise to see if the members believed they were disabled. O’Toole states that, “The forty women who joined the “not Sure” group were all women that…. I would easily consider to be disabled.” Commenting on this quote I wrote, “This quote was really meaningful to me because when people don’t have obvious disabilities it’s very easy to not realize they are disabled. I know I have some impairments that may be considered a disability but really I’m not sure if they would qualify.” Part of the reason why I wanted to take this class in the first place was to figure out if I can claim the title of disabled as an autistic person who has never pursued accommodations until recently, in particular because I’ve been very successful in both school and work. What I never considered until taking this class is that the toll my success it takes on my bodymind and how long it takes me to mentally recover from even a few hours masking is not something to be ignored and I shouldn’t have to feel the need to wait until my breaking point to ask for accommodations.

On October 11th the journal prompt was for us to describe our relationship to identity/culture focused disciplines, and I wrote, “I haven’t taken classes on many identity/culture focused disciplines. However, being in this class has affected me in that I’m more comfortable talking about the issues disabled people face, whereas before I had avoided the subject.” Reflecting on this quote I began thinking about why I had avoided the subject of Disability until now, and I think it’s just because I knew that if I opened that can of worms for myself I wouldn’t be able to close it again. Because of this class I have begun to pay far more attention to my needs as an autistic individual and look at my experience with autism in a kinder light instead of powering through and ignoring my mental health as I was taught to throughout my youth. I have been able to do this because I have learned more about how to look at myself and others through a disability studies lens rather than an ableist one. The phenomena of the conflation health and disability is one that blew me away because I had always unconsciously and incorrectly believed in it just like the women in the O’Toole reading who were unwilling to immediately embrace a disabled identity.

My last important quote was in regards to the phrase “temporarily disabled” from 10/25 where I said, “This is an important phrase because I think most non-disabled people think that disability is usually caused by mistakes, tragic events, poor self-care, and so it can usually be avoided if you’re say a safe driver or take care of your body.” I still think that this is true because I certainly had the idea ingrained into me when I was young and thought I was neurotypical, and it has taken me a long time to feel secure in the fact that I can perceive myself as disabled without having been through a major accident that was the result of the negligence of myself or others. Coming from a family that espouses phrases like “I’ll sleep when I’m dead,” and whose main values surround the idea that one must always be proving their value and usefulness to the world and to the people around them, the idea that I might not be as capable of adhering to that sort of grind culture in the same way that they do was a hard pill to swallow. However, being in this class and reading through the Disability Visibility book about all of the great things disabled people around the world have been able to accomplish for themselves and others often because of their disabilities has been incredibly inspiring to me, even though I have tried to avoid viewing these individuals through a lens of inspiration porn. Overall this course was very challenging for me on a personal level, but I know that the ideas I’m taking away from this class have already and will continue to benefit me in the long run.

Community Over Institutions

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“We Can’t Go Back” by Ricardo T. Thornton Sr.

Summary:

This piece begins with speaker Ricardo T. Thornton Sr. stating the statistic that close to 92,000 people still live in institutions and large public and private facilities for people with intellectual disabilities despite their quality of life being so poor as a result of the harmful structure of these facilities. As someone who grew up in an institution, Thornton describes how no one ever attempted to teach the residents anything or all them to make any decisions for themselves. Even as basic information as who they were related to wasn’t something the staff thought they should know, and Thornton describes how he didn’t know he had a brother and sister living at the institution with him. Thornton goes more into depth about his life story, from leaving the institution to marrying his wife who is another person with an intellectual disability. Both him and his wife are important, active, and productive members of their communities and advocate for change, because all people are more able to thrive in community environments where they are supported by others, have a expectations placed on them, and are given opportunities to enjoy their lives in the way they want to and make their presence known to a community audience.

Quotes:

“People need to have high expectations for people with disabilities because then they’ll give them opportunities to learn and grow” (Wong, 87).

“When I was at Forest Haven, I had a chance to go to the cottage that had the people with the most severe disabilities, who mostly stayed in bed all day. Someone at Forest Haven got a grant so that we went in, gave people musical instruments, and played music while they played along. They loved it and never wanted to go back to their beds” (Wong, 88).

Reflection:

The section I most emotionally connected with in this piece is where Thornton describes how those living in the cottage who had the more severe disabilities at Forest Haven were given the opportunity to use musical instruments and engage with each other and others in a fun and expressive way. The fact that they were only able to do this because of a one time grant and afterwards they had to go back to their previous way of life is incredibly disturbing. I think a lot of nondisabled people don’t understand that for people with disabilities, their human desires for entertainment, expression, and connection are not eliminated. People might say that those with severe disabilities are safer and better off staying in bed all day, but refuse to recognize that many may only stay in their beds all day because their environment given them no compelling avenue to interacting with a community, nor the emotional bandwidth to fight against those in charge.

The Necessity of #DisabledAndCute

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“Nurturing Black Disabled Joy” by Keah Brown

Summary:

This piece begins with the author Keah Brown explaining how the book she wrote “The Pretty One: On Life, Pop Culture, Disability, and Other Reasons to Fall in Love with Me” elicited far more negatives reactions than it was due, as a book about hope, inclusion, equal rights, and joy. She states that most of the people who sent her hate mail were people who were mad that the story was about someone whom they felt they couldn’t relate to as white people, even if they too were disabled. Brown details that media typically portrays disabled people as white men instead of people with intersectional identities and the hashtag she created, #DisabledAndCute, was a way for her to show her joy as someone who is a black, disabled woman. She says that she doesn’t expect herself or anyone else to always be happy, but knows that finding “small pockets of joy” as often as possible.

Quotes:

“When I created #DisabledAndCute in 2017, I did so to capture a moment, a moment of trust in myself to keep choosing joy every single day” (Wong, 118).

“I was once a very self-deprecating and angry person who scoffed at the idea of happiness and believed that I would die before I ever saw a day where I felt excited at the prospect of being alive” (Wong, 119).

Reflection:

I had never heard of the hashtag #DisabledAndCute until I read this piece and so I looked it up online and really enjoyed reading more Keah Brown’s intentions with the hashtag. I read a quote where she explains that oftentimes when disabled people are called cute, it is from nondisabled people who are infantilizing people with disabilities, whether they mean to or not. By calling herself cute, she is working to take ownership of how people with disabilities are represented, because its giving a platform for people to represent themselves rather than other people doing it. A quote from this reading I really appreciated was her words on how she used to be a very self-deprecating and angry person but realized one day that that sort of mentality and outlook on life wasn’t worth it and started redirecting her negative thoughts into productive and positive ones. I liked this because I think its very true that in order to stop utilizing a negative mentality, a person has to use that energy towards something else or else they can never break out of the cycle.

Sketch of Major Project: Disabled Representation in Charity Foundations

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My main focus for the major project is an analysis on how charities and fundraisers have chosen and currently choose to represent people with disabilities in their efforts to acquire funds that would provide them with accommodations and services. This essay will focus specific attention how sponsors, non-profit directors, and the general public respond to different organizations and their success rate compared to the levels of ableism and inspiration porn forced upon the people utilizing these organizations. A source I’m going to utilize is the short documentary “The Kids Are Alright” paying close attention to how the Muscular Dystrophy Association set the precedent for charities for disabled people and how it has influenced organization operations today. A couple of these foundations I’m looking into include Smile Train and Autism Speaks because I’ve heard a lot of negative things about them. Another foundation I will focus on comparing to these is GoFundMe because it functions very differently than traditional charities and brought a new set of issues to the table in how people are able to gain the support they need.

So far my project is going well in that I’ve collected most of the sources I’m going to draw from other than images taken from the sites. So I am focused on working on my arguments in relation to the information and bringing in images as needed. Right now the thing I’m trying to figure out is how to best organize my ideas. I generally know that I want to start off talking about “The Kids Are Alright” and reference one or more of the readings we’ve gone over in class in order to qualify some arguments. Then perhaps going off of that framework I will delve into the specific ways the other foundations poorly represent people with disabilities and/or how the organizations take advantage of those they represent, though I’ll have to do more research before getting into those issues. I’m having trouble organizing our past readings in my head, are there any specific ones related to representation that anyone thinks would be useful for me to utilize in my arguments before I go through all of them again in depth?

Review of Crip Camp

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The documentary Crip Camp features many disability rights activists who began their experience of being in a disabled community at the summer camp called Camp Jened, in New York. At this camp, people of all disabilities were welcome, and everyone was encouraged to participate in activities like baseball, music, and swimming regardless of their disability because the counselors were happy to provide any aid they wanted or needed. The narrator describes how many of the teenagers who went to camp Jened were incredibly isolated in their lives at home because where they lived didn’t have accessible schooling, nor transportation, and so many were unable to thrive in their communities. A central feature of Camp Jened was the emphasis on hearing everyone’s thoughts in discussions as well as full validation of the members experiences with their disabilities and how the outside world treated them. One of the people who went to the camp, Nancy Rosenblum, had a disability that impacted her speech, and all of the other people took great care to try to understand what she had to say, because no matter what, her voice and presence was valuable to the collective.

Once many of the members grew up and left Camp Jened, they began activist work together in order to create accessibility in the places they lived. One of the most prominent disability rights activists to come out of Camp Jened was Judith Heumann. She fought for “the reframing “disability” as a social and political, rather than simply a medical and rehabilitative, problem; the shift in priorities from correcting individuals to reforming society; the assertion that the necessary means for social participation and integration, whether devices or services or access and accommodations, should be enforceable civil rights rather than dispensations of charity” (Nepveax, 21). Heumann spoke to lawmakers in New York, California, Washington DC, and likely other states advocating for the Disability Integration Act to be enforced to end institutional biases. While working as one of the prominent leaders of the Disability Rights Movement she organized building takeovers and shocking demonstrations. The Activism chapter of Keywords for Disability states that, “Although much social and policy advocacy now takes place online, street protests, disruptive occupations, and performance oriented street-theater remain crucial ways to draw attention to disability issues that might otherwise be rendered invisible” (Nepveax, 24). This statement describes perfectly the methods in which Heumann and other activists garnered media attention and brought awareness to the public.

This documentary was very moving to me because of the strength of the community that was built from a single space focused on access, equality, perseverance, and fun. I laughed along with the Camp Jened members when they had an outbreak of crabs and had to quarantine, and I had tears in my eyes when Judith Heumann bit back her own tears while speaking to lawmakers about the lack of access her and her community dealt with every time they tried to move through the world. I give Crip Camp a 4.5 out of five only because I wish they had gone into the creation and evolution of Camp Jened when it started in 1952 move in depth, because Judith Heumann and many of the other activists that came from the camp attended in the 1970’s after it had been running for nearly two decades. This film should definitely be shown and discussed in high schools, because it is a perfect representation of how small communities can impact the entire country. What started as a fun way for people with like experiences to form friendships and a sense of collective and personal identity, became an organization of intelligent, strong individuals who gained international acclaim for their work.

Major Project Proposal: The Beauty of Disabled Gods

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  1. Title:
    Disabled Gods of the Modern Age
    Why aren’t there more disabled gods in mythologies around the globe? Why are many of the ones who do exist disabled because of violence committed against them? I propose a series of paintings featuring possible new disabled gods fit to be worshipped by the modern person who values the disabled community and the power of the people within it.

  2. Central Question:
    Through this series of paintings, I want to explore how disabled people are represented in various religious traditions by features some well known ones including Greek god Hephaestus, Egyptian god Bes, and the Hindu god Aruna. However to supplement these existing gods, I will make up gods of all races, sexualities, genders, sizes, ages, and disabilities. Through working on this project I hope to better understand how media representation influences our culture’s view on disabled people, taking care to make their godly domains and powers influenced by their relationships with their disabilities in ways that highlight the beauty of their disability. My aim is to be respectful of existing polytheistic religions while simultaneously recognizing a lack of deities in world religions that have disabilities, due to the widespread levels of hostility towards disabled people throughout the world.

  3. Production Design:
    My collection of paintings will be in a quasi-zine format in the sense that they will all be bound together in a booklet. I’m not sure about the sizes of the paintings but my projection is that they will be around 6 inches by 9 inches each. When the booklet is opened, on the left side there will be an in depth description of the god as well as quotes and analyses taken from some of the readings we’ve consumed in this class. On the right side will be the painting so the viewer can reference the information on the left as they view the image. Ideally, I will make ten different paintings, some being real gods from world religions, and others being the ones I have invented. The beginning few pages I will introduce the concept of the piece, how it is influenced by disability studies, and what I hope to achieve with its creation.

  4. Production Plan:
    My first course of action will be deciding which disabilities these gods will have, how best to represent them in a respectful manner as well their other intersecting identities after researching their specific disability. I will decide how to represent any prosthetics or tools they use such as wheelchairs, canes, and other equipment. Next I will decide upon their names and domains of power. I will collect images off of the internet for inspiration concerning the aesthetics of each god as well as how to visually represent their disability based on the real people with the disability. I may take inspiration from some of the stories featured in the book Disability Visibility while making sure to give those writers credit.

    -By November 13th, I will have the general information on each god solidified and a general structure for the presentation of my research.
    -By November 20th, I will have done at least one rough draft of each of the paintings.
    -By December 4th, I will have all of the final drafts of the paintings completed as well as my writing done.
    -By December 8th, I will have the booklet put together and the finishing touches done.

  5. Consultation:
    My biggest concern with this project is the possibility of accidentally representing any of the disabilities I choose to feature poorly, and so I would love to check in with you on my ideas for each one once I have them, to make sure I’m being respectful. My goal and intent will be to use person/god first language as well as with the way they are depicted because the last thing I want is for them to look like a fantasy-world versions of medical images. I worry that the premise of this project might be skewed by my perspective as a non-physically disabled person, and so if you have any concerns with any part of this project I would love to go over them. My proposed project is very art-based, and less research-based focused mainly to inform my choices in the production of the pieces, so if the level of research I plan to do at any point seem subpar, I want to supplement it to the best of my ability using the readings we’ve gone over in class as well as outside readings I’ve found on my own. I can also have a conclusion section at the end of the booklet where I go into more depth on the research that informed the project if you think that would be beneficial.

  6. Citations:
    A few possible readings that may influence my project:

https://www.greekmythology.com/Myths/Figures/Teiresias/teiresias.html

Disabled Gods: A Critical Disability Studies Analysis of Ancient Greek Myths (umsl.edu)

What is Metis? | Dolmage | Disability Studies Quarterly (dsq-sds.org)

Professional Relations with the Devil

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“Unspeakable Conversations” by Harriet McBryde Johnson

Summary:

This piece is about Harriet McBryde Johnson, who was an American author, attorney, and disability rights activist. She details a particular struggle with a well-known Australian moral philosopher Peter Albert David Singer, who is currently the Ira W. DeCamp Professor of Bioethics at Princeton University. Despite protests from Johnson’s activist peers, she decided to debate with Singer multiple times in public forums and maintain respectful contact with him through email. As a strong proponent for genocide, Singer exhibits a great threat to the disabled community because of his large platform, status, and speaking skills. Throughout the piece, Johnson remarks on how kind and respectful he is to her despite his belief that she should have been killed as an infant so as to not burden her parents. Johnson grapples with the fact that people can hold incredibly dehumanizing and dangerous beliefs and still be pleasant people to be around. She also grapples with the issue of whether she should engage with a man like singer in any way, because speaking with him could give the sense to the public that she is legitimizing his standpoint as one that is worthy of consideration. During her experience of debating with Singer and maintaining a respectful professional relationship she highlighted many various accessibility obstacles, showing that much of our culture’s infrastructure agrees with Singer’s ideas.

Quotes:

-“He insists he doesn’t want to kill me. He simply thinks it would have been better, all things considered, to have given my parents the option of killing the baby I once was….” (Wong, 3).

-“We shouldn’t offer assistance with suicide until we all have the assistance we need to get out of bed in the morning and live a good life” (Wong, 20-21).

“If I decline, Singer can make some hay: ‘I offered them a platform, but they refused rational discussion” (Wong, 11).

Reflection/Response:

Something I really appreciated about this piece was how Johnson expressed some of her major counterpoints to Singer’s ideas, specifically the one about assisted suicide. Singer believes that disabled and terminally ill people should be able to access assisted suicide, and doesn’t understand why she disagrees, because isn’t disability activism about providing more choices and access to disabled people. However, she counters that idea by saying that if we fixed the accessibility problems in the world, many disabled people would not want to commit suicide because then they would be able to function the way the want to in our culture. This point really struck me, because I had been on the fence about assisted suicide and now I’m unequivocally against it. This piece really made me think about how we define good and evil in the world, because as shown with Singer, evil people usually believe they are doing good in the world. It also made me think about how our culture so heavily focuses on social norms of respect and kindness to the point where Johnson was never truly able to express her hatred of him for fear of delegitimatizing herself as a professional, intellectual speaker.

Exploring Meaning In Systems of Power: A Composite Essay on Disability Studies

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A) Defining Meaning in Terms of Disability Studies

I don’t think the phrase Disability Studies has just one meaning. Similarly, I’m not sure if it’s anything more than a noun describing an academic discipline that examines the nature and effects of disability through texts written by, often for, and about people with disabilities. When trying to define nouns, usually their meaning comes from listing the sum of their parts or their function. The basic definition of a wheelchair is that it is a chair mounted on wheels for use as a means of transportation. But asking the question, “what does the word ‘wheelchair’ mean?” is different than asking what a wheelchair is. This is because the word ‘meaning’ implies that the noun has individual significance to those interacting with it, like a symbol, whereas a definition exists on a societal, discourse-based plane. When I ask myself what Disability Studies means, I first choose to recognize that on a societal plane, my meaning means very little, and there is a high possibility that its significance to me only scratches the surface of what it really is. Likewise, the true definition can only scratch the surface of its significance to me. But then again, maybe I just have trouble comprehending abstract nouns without associating them with tangible objects. This happens to be why Dictionary.com is a tab I have always opened on my laptop. Therefore, to me Disability Studies is sitting in a classroom on wheel-y chairs at wheel-y tables with the expectation that if a wheelchair user were to enter through the door, they would be able to maneuver through the class easily, both in the metaphorical sense, and the physical sense. I think one of the main points of Disability Studies is to learn about and understand the needs of those with disabilities, and to create accommodations. I’d even go as far as saying the final goal of Disability Studies is to eliminate the need for “accommodations” because that term in of itself implies that those creating the accommodation are performing a kindness or a favor for those who require them. Therefore, perhaps engaging with Disability Studies is the act of recognizing that disability itself is normal, and thus “accommodations” shouldn’t be seen as anything more than the expected requirements followed by all institutions and spaces for the functional participation of every person. 

B) Questions: Can we Close the Gap between Theory and Praxis?

The questions I want to ask as we move forward might not have answers, or might have far too many. With that in mind, based on the idea that disability only exists within the context of its environment, I want to know, if we are able to change our environments by making them accessible to all, would we lose the term “disability” and the good that a label can bring to those seeking community? Is this question even relevant considering the current climate of minimal accessibility in most institutions and spaces? This again brings me to the difference between abstract nouns and physical nouns. Is the ultimate goal to support people with disabilities to the point of eliminating the need for the descriptor itself, because it implies a deviation from the norm? How can we actively change our culture’s societal expectations for how a “normal” person looks, acts, and lives? Should we be trying to destroy the concept of “normality” itself, by perhaps simply replacing it with the word “common?” Is it right to label people by what they cannot do, how they cannot exist, or function? Is a way of reversing this convention to start thinking about disability being the norm through the use of the word “nondisabled” rather than say “able-bodied,” because the word “nondisabled” implies that a person who lacks disability is the one who is deviating from the norm? I’m not sure if any of these questions even deserve discussion because of their theoretical nature compared to questions based in praxis that might lead to more material change in the lives of people with disabilities. A few final questions are: Should people who have no disabilities even have a right to voice their opinions on Disability Theory? Should their opinions just be seen as less valuable due their inescapable presence in discussion about changing spaces to increase accessibility? 

C) 

  1. Meaning and Authority:

Based on information I’ve drawn from the readings Reassigning Meaning by Simi Linton and Celebrating Crip Bodyminds by Corbette Joan O’Toole, my first topic of discussion is focused on terminology within Disability Studies, and the history of the groups of people have had the social and legal authority to create and define those terms. Linton writes, “A glance through a few dictionaries will reveal definitions of disability that include incapacity, a disadvantage, a deficiency, especially a physical or mental impairment that restricts normal achievement; something that hinders or incapacitates, something that incapacitates or disqualifies” (Linton, 10-11). This quote is interesting because I think it’s important to ask where dictionary writers are getting their definitions that are put into publication and become standard. Clearly the words like handicapped, crippled, and special were not created by the communities they were meant to represent, and instead were designated by nondisabled people who viewed disabled people as lesser beings. From what I learned from Linton is that much of the arbitrary designation of terms were upheld by those in the medical field who were primarily white, upper-class men who made strict distinction between how they viewed a “normal” bodymind is supposed to exist, and those considered abnormal despite the commonness of disabilities throughout all human populations. O’Toole writes, “Once we stop viewing ourselves from the medical perspective of sickness, diagnosis, and aberration, and find circles of disabled people, we can often feel pride about who we are, the skills we’ve learned and the interdependent circles we’ve created (O’Toole, 14). I really appreciate this quote from their piece because only in the last handful of decades since the Disability Rights Movement have disabled people been able to lead the discussion on disability and how they deserve to be treated within medical institutions, in academia, in media, and every space that nondisabled people occupy and have a history of excluding disabled people from. Linton writes, “The Disability Community has attempted to wrest control of the language from the previous owners, and reassign meaning to the terminology used to describe disability and disabled people” (Linton, 8-9). From what I can tell, there is still a long way to go for the disabled community in terms of wresting authority on the language surrounding disability as well as making legal strides to uplift the community. However, the field of disability studies continues to grow and I do think there will be great progress made in the next few decades.  

  1. Celebrating Disability: 

As stated by S.E. Smith in “The beauty of Spaces Created for and by Disabled People” from Disability Visibility, “there is something weighty and sacred here…. where disability is celebrated and embraced” (Smith, 271-273). This second topic I have found particularly significant because it seems that a large aspect of disability studies is centered on not only on how the disabled community is trying to garner a baseline human respect from their nondisabled peers, but also a respect that their bodies and minds are not undesirable to inhabit and exist within. O’Toole writes about how oftentimes in the United States, people will test for fetal “abnormalities” during pregnancy so parents can decide whether or not they want to abort a potentially disabled child. For a long time I was only ever aware of the ableist rhetoric behind this practice which centers around the idea that parents wouldn’t want their child to have to “suffer” from their disability, and the quieter notion that the parents wouldn’t want to “suffer” from being financially tied to a child that may require medical care which is far more expensive in the United States than any other first world nation. However, through this class, it has become clear that one of the only reasons why these ableist societal beliefs exist is because of a lack of accessible infrastructure in our institutions and a generally gargantuan disrespect for any human lives that deviate from the “norm,” especially multiple overlapping marginalized identities. O’Toole writes that, “For many of us, the reality of being disabled, the way our bodyminds function is cause for celebration” (O’Toole, 14). Because of the disenfranchisement of disabled people, the ability to create loving, supportive communities has allowed for a much greater quality of life for disabled people, which wouldn’t be possible without their strength and determination. Disability is cause for celebration because experiencing life itself is cause for celebration, in any and all forms it takes. 

  1. Compulsory Able-Bodiedness

The concept of compulsory able-bodiedness is a subsequent issue that stems from the two prior ideas. In the chapter “Queer” in Keywords for Disabilities, the author Tim Dean references another authors work, saying, “Rosemarie Garland-Thomson deployed the concept of the “normate” in her influential book Extraordinary Bodies to designate ‘the social figure through which people can represent themselves as definitive human beings’ (1997, 8)” (Dean, 144). This idea is important because when people are forced to, or expected to compare themselves to an unrealistic ideological standard, their framework of the world becomes imbedded with the sense that they are the incorrect form of a human being, when there really isn’t a true and perfect form other than what people have collectively decided it is. This ties in with how sexuality is talked about in terms of Disability Studies as well. Dean succinctly explains that “Comulsory hetero-sexuality depends of compulsory able-bodiedness, since heteronormativity assumes first and foremost that sexual subjects must be able-bodied, healthy, and therefore ‘normal’” (Dean, 143,144). The way that I interpreted this concept relates to the previous sections where O’Toole expresses their issues with aborting disabled fetuses. Because of the relationship between heteronormativity and able-bodidness, there is the problematic societal expectation that people with disabilities should engage with their sexualitites because of our culture’s history of eugenics, and the violent discouragement from reproduction that people with disabilities have faced in the past from bigoted systems of power. However, we can choose to see truth in the idea that “Queer approaches to thinking about disability and sexuality argue that neither the human body nor its capacities are biologically determined; rather, both disability and sexuality are constituted via sociocultural processes of normalization” (Dean, 144). This quote is particularly meaningful because it separates both disability and sexuality from the body as concepts, and places them in the realm of the environment. As I’ve stated previously, our conceptions of what disabilities are, only exist because of the expectation that people are supposed to function differently. Similarly, our culture’s expectation of heterosexuality as norm is what has led to the quantification of other sexualities being lumped together under umbrella terms like “queer.”

Works Cited:

Dean, Tim. “Queer” Keywords for Disabilities. NYU Press, 2015. pp 143-144

Wong, Alice, et.al., Disability Visibility. Vintage Books, June 2020.

Linton, Simi. Reassigning Meaning. NYU Press, 1998. Pp 8-11

O’Toole, Corbette Joan. “Celebrating Crip Bodyminds, ”Fading Scars: My Queer Disability History, 1st ed., Autonomous Press, June 9th, 2015. pp 14.

Shining a Light on Disability Visibility

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Disability Visibility, edited by activist Alice Wong, is a collection of short personal essays written by a diverse group of disabled writers about their experiences with disability. As stated in the book’s back-cover blurb, “One in five people in the United States lives with a disability. Some are visible, others less apparent-but all are underrepresented in media and popular culture.” This fact necessitates a book like this one, because if disability is one day able to be seen as the norm, rather than a negative deviation from it, then nearly seventy million people in the United States will have their lives improve with the subsequent focus on necessary accessibility that many of the writers in this book advocate and create for themselves and the members of their community.

Among other uses, this book can give people with disabilities a sense of unity, faith in themselves and others in their capabilities to create change in the world, inspiration to tell their own stories, as well as a guide for building the healthiest relationship with their disabilities possible. For those who are nondisabled, this book can give them more awareness about the lives of people with disabilities, and help them recognize poor media representation that attempts to dehumanize disabled people. Reading this book can also inspire them to look within their own discourses for area where accessibility is needed so the responsibility of advocating for and creating it isn’t entirely placed on those who need accessibility.

One story in the book focuses on how an astronomer who became visually impaired during the height of her career. “How a Blind Astronomer Found a Way to Hear the Stars” by astronomer Wanda Díaz-Merced follows how she innovated her entire field by creating a technique of analyzing supernovas through sound, when previously, astronomers were only able to analyze them through visual reconstructions from data. This kind of novel innovation opened up an entire scientific field to people with visual impairments, and was only possible because of Díaz-Merced and a few of her colleagues’ determination to create accessibility. She states that, “If people with disabilities are allowed into the scientific field, an explosion, a huge burst of knowledge will take place” (Díaz-Merced. 173).

Another story called, “Imposter Syndrome and Parenting with a Disability” by writer and activist Jessica Slice who has Ehlers-Danlos syndrome focuses on her self-worth in regards to motherhood. She expresses in the piece that she is often unable to provide for her son in a way that other mothers based their identity of motherhood on, mainly in regards to physical activity. However, Slice gives the perspective that although she may not be able to pick her son up or drive him places, she is able to give him the emotional attention and steady presence that the children of nondisabled parents often lack from their caregivers. She writes that, “Love isn’t a collection of capacities, of practical contribution” (Slice, 132).

One last story overview is about “If You Can’t Fast, Give” by Muslim actress and comedian Maysoon Zayid, who has cerebral palsy. She expresses how Ramadan, or month of fasting that takes place yearly in Islam is not a requirement for people with disabilities or illnesses to undertake. Despite this, she chose to participate for as long as her cerebral palsy allowed. When the time came that she couldn’t participate for serious risk of her health, she decided to instead follow the tenants of her religion by making donations to charity in place of Ramadan, instead of feeling ashamed that she could no longer participate in the way she wanted to. Zayid states, “Muslims fast so they can suffer a little. It is important not to die in the process. Instead, those who can’t should channel their devotion into charity. This will not only help you stay healthy but also will help someone who is genuinely suffering” (Zayid, 38).

What each of these stories have in common is the idea that although people with disabilities might not be able to participate in their discourses like their occupations, their families, and their religions in the same ways nondisabled people traditionally do, they still occupy an essential role in their communities and are able to create meaning in ways that greatly improve the world around them. In fact they often do so in ways that nondisabled people either cannot or choose not to. Disability Visibility highlights this idea very well, the only problem I found with the book was that I wanted to hear more than a few pages of the experiences of these disabled writers, and many others with disabilities not mentioned. After all every of the one in five people with disabilities in the United States experiences their disabilities differently, especially within the context of the other parts of their lives. Perhaps a sequel is in order.