Jodie Hare On The Politics Of Neurodiversity

Following Secretary of Health and Human Services Robert F. Kennedy Jr.’s wide publicized and mendacious claims astir autism, writer Jodie Hare joins co-hosts Whitney Terrell and V.V Ganeshananthan to talk astir nan authorities of neurodiversity and nan value of autistic communities. Hare, who was diagnosed arsenic autistic successful adulthood, explains really nan pathologization of nan autistic organization is historically connected to industrialization and capitalism. She besides discusses nan discriminatory and criminal history of searching for a “cure” for autism done a bid of sadistic methods, which person each failed. She challenges nan thought that location are normal and abnormal ways of living, and sounds from her book, Autism Is Not a Disease: The Politics of Neurodiversity. 

To perceive nan afloat episode, subscribe done iTunes, Google Play, Stitcher, Spotify, aliases your favourite podcast app (include nan guardant slashes erstwhile searching). You tin besides perceive by streaming from nan subordinate below. Check retired video versions of our interviews connected nan Fiction/Non/Fiction Instagram account, nan Fiction/Non/Fiction YouTube Channel, and our show website: https://www.fnfpodcast.net/. This podcast is produced by V.V. Ganeshananthan, Whitney Terrell, Hunter Murray and Vanessa Watkins 

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From nan episode:

V.V. Ganeshananthan: In your book, you talk really nan thought of uncovering a “cure aliases origin for autism” has led to immoderate acheronian places and acheronian policies. I wonder, tin you talk a small spot astir that history?

Jodie Hare: Yeah, absolutely. So, I mean, I deliberation it’s cardinal to retrieve that nan test itself of autism has only existed for astir a century. It’s not a ace aged diagnosis, but essentially, beautiful early on, from its inception, location was a quest to cure these things. You know, Hans Asperger had reportedly sent 1000s of abnormal children and autistic children to their deaths for simply not gathering nan quote, unquote, “Nazi ideal” of a child. And that benignant of desire to eliminate autism, aliases autistic group successful general, has continued. 

It is simply a scaremongering astir autistic lives and nan benignant of desire to eliminate that has led to cures that person included—well, quote, unquote “cure,” sorry, should I say? Because location is perfectly nary impervious that immoderate of these work, nor person they. Things for illustration electrical daze treatment, things for illustration bleach treatment, things for illustration exorcisms, ABA therapy, which has successful nan past included slapping and unit towards children erstwhile they behave successful ways that are seen arsenic supremely autistic and truthful successful request of removal. It is simply a changeless desire and a changeless area of investigation that has money funded, pumped into it non-stop successful hunt of a measurement to eliminate autistic people. And to this point, each of it has failed. There is nary research, location is nary curen that has been done that has been proved successful a cure for autism. And I think, you know, it’s—

Whitney Terrell: So he’s not going to find a cure by September. And first of all, nan thought of uncovering a cure is itself a bad idea. It’s really a shape of discrimination, nan conception of it, right? Isn’t that what you’re saying?

JH: Absolutely. I deliberation it’s who has nan authority to determine whose lives are worthy living. I deliberation that’s what it comes down to. Who has nan correct to determine that autistic group don’t merit to proceed their lives. I deliberation that is nan bottommost line.

WT: He mentioned successful that aforesaid speech—I conscionable want you to remark connected this, because I deliberation that this seems self-evident—I’ve seen group talk astir it connected societal media, but he keeps insisting that there’s been a emergence successful autism. Is location immoderate grounds for this, existent technological grounds for it? 

JH: No. There is grounds that location are much diagnoses, and what that comes down to, successful position of research, is that we person a greater knowing of autism—

WT: Like you. You were misdiagnosed for a important information of your life.

JH: Yeah, and I cognize a batch of autistic group who person lives that look very akin to mine, and person had that aforesaid test journey. I deliberation what we person is we person reached a constituent wherever we cognize better. We person amended knowledge. We person amended ways of communicating that knowledge, and we are identifying much group who request support erstwhile they request it. That is nan agelong and short of it. And I deliberation Trump said location is simply a spray that we mightiness beryllium utilizing that’s turning group autistic, and conscionable those things are wholly unfounded. There is nary investigation to support that.

VVG: My belief is that immoderate of these diagnoses are besides nan consequence of accrued attraction successful underrepresented communities that are traditionally not really portion of technological investigation aliases study, and that attraction to communities that are underrepresented minorities, that a batch of those diagnoses are successful that area, which makes consciousness to me, and besides considering nan Trump administration’s attacks connected DEI that, of course, is besides portion of this analyzable and shitty story.

WT: One past thing. We conscionable person to opportunity this. It’s not caused by vaccines, right?

JH: Correct. There is nary investigation that proves for definite that autism is caused by vaccines. The 1 study that group mention to has been debunked galore times complete nan years. People who activity successful those spaces person besides said that nan study itself was primitively done incorrectly aliases successful mediocre form, but essentially, yes, location is nary proof, nary investigation that shows that nan vaccines origin autism.

WT: I thought your book was really adjuvant because it made maine understand amended why neurotypical group cling to that peculiar explanation, because they want to perpetuate nan thought that there’s a cure. They want to perpetuate this thought that this is someway not a different category, it is fixable. It’s for illustration they would beryllium normal if they—No, these people, alternatively of accepting nan group for who they are and really they are, this is simply a measurement of skipping complete that step.

JH: Yeah, absolutely. I deliberation really providing autistic group pinch dignity and humanizing them and believing that they merit nan correct to a bully life arsenic overmuch arsenic non-autistic group would require a batch of group to interrogate nan measurement that they spot nan world. It would inquire them to interrogate their ideas of normality, what they see correct and wrong, what they see to beryllium a bully life, and a batch of group don’t want to do those things, and truthful it’s overmuch easier to opportunity autistic group are broken, really tin we hole them?

VVG: So we’re talking astir nan ways successful which group are misunderstanding, misapprehending nan quality of autism and its unthinkable range. In your book, you besides pass astir a newer danger—I thought this conception was truthful interesting–-that we whitethorn beryllium opening to position autism arsenic a benignant of superpower, aliases a measurement to beryllium much efficient. And early successful nan book, you mentioned Rain Man, which was astir apt nan first depiction of autism I ever saw erstwhile I was a small kid, earlier I met immoderate of my autistic friends aliases family. Would that beryllium a bully illustration of what you’re talking astir location pinch nan superpower?

JH: Yeah, absolutely. I deliberation particularly successful nan U.K., and successful nan discourse of neoliberalism, location is simply a unit to deliberation about, really tin we make money disconnected of autistic people? If we’re going to beryllium much accepting of them, really tin we usage them? So location is simply a push towards—there are group for illustration nan financial papers who are saying, “Oh, well, if you prosecute much autistic group and judge them, you tin boost your profits by specified and such.” So we are astatine consequence of trying to move successful nan correct guidance and pushing excessively acold nan different way. We request to scope a constituent wherever we opportunity it’s okay if autism is conscionable autism arsenic it is, it doesn’t mean that it has to beryllium a superpower. It will proceed to beryllium a disablement for galore people, but that doesn’t mean that being abnormal intends your life is immoderate little worthy aliases valid aliases valuable than anybody else. 

I deliberation nan benignant of depictions, for illustration Rain Man, are very specific, and there’s been a batch of instances wherever those films are made aliases written by group who aren’t autistic, aliases don’t cognize immoderate autistic people, aliases person entree to autistic communities. I deliberation we are opening to spot shifts successful that. You know, location are books, for example, successful nan UK, 1 that I really like, called A Kind of Spark. There’s besides a batch of autistic group who admit themselves successful characters that were possibly created not needfully to beryllium autistic but conscionable by nan quality of really they were written, extremity up being seen arsenic rather autistic. So there’s things for illustration Heartstopper on Netflix, and there’s rather a fewer characters successful that, peculiarly group for illustration Isaac, who nan autistic organization mention to arsenic autistic caput canons. So that’s a measurement to say, I admit myself successful this character, and I deliberation it’s a really bully opportunity that autistic group are opening to spot themselves reflected successful nan media that they consume. 

VVG: So, arsenic I was referencing earlier, President Trump has been launching various assaults connected DEI programs that instruction accessibility for group pinch disabilities present successful nan U.S. And I mean, nan U.S. has agelong been—we person nan Americans pinch Disabilities Act. I mean, successful immoderate ways, we person been a destination for group pinch disabilities to consciousness for illustration they person immoderate ground successful nan rule for adjacent treatment. You person a conception successful nan book titled What Should beryllium Done. So, what should beryllium done?

JH: I deliberation that this is simply a immense question. We could spell connected for hours astir this, and location are each kinds of group who person different answers. Some of nan main things that I talk astir successful nan book that I deliberation are worthy highlighting are improved backing for organization services for autistic people, that is time centers, that is location attraction providers, that is supporting families who person autistic children aliases autistic family members who are high-support needs and require that care, and that attraction needs to beryllium provided free astatine nan constituent of work by nan state. There needs to beryllium improved training astir neurodiversity and that is successful each sectors. Autistic group request to beryllium capable to spell to nan hospital, to spell to school, to spell to nan library, and consciousness that they are entering spaces that are accessible and that they tin person their needs met and pass pinch group who will respond good to that communication. 

There needs to beryllium amended funded investigation that is focused little connected cure and much connected improving value of life, and knowing what it looks for illustration for an autistic personification to unrecorded a bully life, to unrecorded a life that is, you know, awesome and joyous, and without threats to information and that benignant of thing. There needs to beryllium a wide betterment successful accessibility for each nationalist spaces. And you know, that’s besides peculiarly applicable successful position of work, because successful places for illustration nan U.K., only 20 percent of autistic group are successful work. There needs to beryllium an improved use and use system, because nan quality of autism is nan truth that it is simply a disability. And location are group who won’t ever beryllium capable to work, but they still merit nan correct to a bully life, and they request nan money to do so, nan money to unrecorded off. There needs to beryllium an interrogation of nan underlying ableism that impacts truthful overmuch of our society, our living, nan measurement that we spot people. And we request to combat a batch of nan maltreatment that autistic group face, and spot them arsenic humans who are deserving of life and attraction and dignity. And you know, yeah, humanity. I know, only a fewer mini things to inquire for, but that would beryllium a bully starting point, I think.

Transcribed by Otter.ai. Condensed and edited by Vianna O’Hara.

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Jodie Hare

Autism Is Not A Disease: The Politics of Neurodiversity • Why we must politicise neurodiversity | shado •  Autism cannot beryllium cured — extremity trying | huck, July 2024 • The Dehumanisation of Autistic People Must End | Verso blog, May 2022

Others:

Empire of Normality  by Robert Chapman • Unmasking For Life: The Autistic Person’s Guide to Connecting, Loving, and Living Authentically by Devon Price, PhD • Neuroqueer Heresies  by Nick Walker • RFK Jr. Is Using a New Study connected Autism Rates to Push His Anti-Vaccine Agenda | Mother Jones • People pinch autism activity dignity wherever RFK seeks a cure | Axios • RFK Jr. Calls Autism ‘Preventable,’ Drawing Ire From Researchers | The New York Times • A Kind of Spark by Elle McNicoll • RFK Jr. Set to Launch Disease Registry Tracking Autistic People | The New Republic