Is it OK to “suffer from autism”?

Are we wasting time on semantics debates in the autism community?

large

I’ve just finished plowing through a bunch of articles on the use of certain terms in the autism community that seem to set off flame wars on a regular basis. For instance, the person-first language debate between “person with autism” vs. “autistic person.” Parents often prefer the former and autistic people (obviously those retaining the power of speech) prefer the latter. Parents are concerned that if people refer to their kids as “being” autistic rather than “having” it, their identity as people with dignity will be infringed upon. Autistic people feel that autism is not a disease, but a much-needed identity in a world that has socially denied them a clear one.

But this article is not about that.

Autistic people suffer both directly and indirectly from the consequences of autism.

Recently, an autistic friend of mine wrote an article that mentioned the phrase “suffers from autism” as being insulting. Is it controversial? Yes. After all, it made me begin to think unceasingly (as I do) about autism and suffering. While I understand that much of the bullshit autistic people and their loved ones have to endure is due to living in a world that is uninformed, unsympathetic, and unaccommodating, a lot of it for some if us is a direct result of the condition itself. Autistic people do suffer; both directly and indirectly from the consequences of autism.

Some examples from my own experience might clarify this. A great deal of my personal suffering is because of the way the world misunderstands autistic people. Especially before I finally diagnosed myself at almost 40 year old. I was isolated as a child because teachers don’t have time to help out a kid who’s not fitting in. I was bullied because pre-Columbine, there was not much traction for anti-bullying programs or activism. Such that I only complained to a few adults before stopping altogether. I was always lectured by these adults on being sensitive to the struggles of those who were harassing me – “Her parents are going through a divorce.” – “He has a tough home life.” – “That’s just how his parents raised him.” My struggle was never the priority because adults simply didn’t want to put forth the effort to address a sticky, but far more serious than they suspected, “childhood problem.” I suppose they thought it would be over in a short number of years, but adults on the spectrum know that bullying only escalates after the school years are over and the stakes are much higher.

Clearly these difficulties are due to a lack of understanding and accommodation – including my own gross misdiagnosis for so many decades.

We mustn’t allow arguments over words and internecine debates to obscure the most urgent problems we face.

But we have to remember that autism is not just a mental condition – it affects many other systems of the body and this seems to be a little known fact in the wider world. As a young adult my mind was screaming to be released from the shallow neurotypical facade I had forced myself to produce due to the constant prodding from influences both personal and cultural. This led to increased gastro-intestinal issues which resulted in my being in extreme pain because I was digesting my own esophagus with severe acid reflux.

I suffered.

Years after this problem was resolved, I began to feel a little twinge of sharp pain in the end of my pinkie finger. I tried to ignore it but the pain kept increasing over time and eventually I was having nerve paroxysms so severe that the upper right half of my body was useless, the tendons in my neck and shoulder froze, and still no one could identify what the problem was – when they believed me about the pain at all, of course. Finally, through a charity organization (no health care) I was able to see a hand specialist.

I care less about the semantics and culturally-loaded terms used to describe ourselves and more about discussing the degree of suffering itself.

I had an exceedingly rare type of neuroma made up of an overgrowth of sensory nerves in my extremities. They tend to occur at the base of the skull, on the tympanic membrane, and under finger and toenails – anywhere there is a high concentration of sensory nerves. I don’t need to tell you that there is a direct connection to neuropathy and conditions of the sensory nerves in autistic people. This type of tumor is so rare that there has been little research on it and therefore it is not known if they occur more in autistic individuals, but several other members of my family on the spectrum have had rare nerve tumors in other parts of their bodies that caused extreme pain and required surgeries.

I can’t go into detail here about the excruciating five year process I went through, all the while unable to work or bathe regularly or function, in order to get these tumors removed. In addition to the other consequences of being mentally misdiagnosed. My fingernail had to be excised several times and the microsurgery performed to remove the overgrown nerve cluster required weeks of recovery every time. I’ve never found another medical description that emphasizes the quality of the pain of a condition like this one does. Most request the amputation of their fingertips and require psychological consultations for the mental effects of chronic pain. As did I.

 

So again, I really suffered. Clearly I have no problem with this phrase in reference to myself.

But is it OK for non-autistic people to refer to someone as “suffering from autism”? Perhaps not, but I’m a bit jaded after all this time. I care less about the semantics and culturally-loaded terms used to describe ourselves and more about discussing the degree of suffering itself.

One day we will learn to ride the delicate line between pathologizing and romanticizing autistic people.

I know from having met and loved many other autistic people throughout my life that they have some of the most hair-raising personal stories of any group of people. It’s worth noting that most of the popular books written by autistic adults are by those who have seemingly been more successful and supported than the majority. Far be it from me to get bogged down in the Comparative Suffering Olympics that stymie special interest groups from time to time – See white feminists vs. feminists of color. However, the autistics who are the most marginalized, impoverished, and challenged are rarely the ones with the support network and means to get their stories written and published and promoted. 

I don’t want to continue to gloss over the horrible experiences of autistic people. I want us to collect and share our stories with one another and the wider world.

Therefore, we are having our tales of injustice and medical malpractice buried along with our unique perspectives. I know as a woman and sexual assault victim (another loaded word I have no problem using), that those who want to maintain the status quo and not go to the trouble of understanding us or helping change the world to accommodate and protect us, want us to just shut up about our suffering. In fact, the demonization of the word “victim” is an example of that. When we tell our stories we are accused of “being victims” in order to defame us as being “too sensitive.” Assholes don’t want to acknowledge that broken institutions and predators cause great suffering for people of different demographics and circumstances. They definitely don’t want you going into the details of your ordeal to bring a personal, human face to certain societal issues.

This is an invitation to silence that must shouted over.

I don’t want to continue to gloss over the horrible experiences of autistic people. I want us to collect and share our stories with one another and the wider world. The disabled and neurodiverse are the most impoverished demographic in America – indeed in the world. We are the most sexually assaulted and exploited.  We are still fighting for jobs, reasonable medical treatments, and accommodations. We are dealing with stigma and fear. We are even gunned down by police regardless of race. Semantics can go on the back burner as far as I’m concerned.

One day we will learn to ride the delicate line between pathologizing and romanticizing autistic people, but we mustn’t allow arguments over words and internecine debates to obscure the most urgent problems we face.

Why did white women vote for Trump?

Women are still encouraged to oppress themselves.

larger
This is what self-oppression looks like.

Since the Election of Doom prominent liberals have expressed shock and dismay at the 53% of white women who voted for Trump. Tina Fey sort of joked, “A lot of this election was turned by white, college-educated women who now would like to forget about this election and go back to watching HGTV.” Samantha Bee told white women they “have a lot of karma to work off.” And Lena Dunham lib-splained on The View that white women are “not only voting against the interests of their sisters, of women who may not look like them, who they may not understand, but whose rights are just as important,” but also “voting against their own best interest.”

And they’re totally right, even about HGTV.  The nesting instinct is strong in them.

richyoung

When some of the ladies pushed back at Lena’s scolding she, to her credit, said:

“So many women aren’t raised with the rhetoric of self-empowerment. The messages they’re hearing from Donald Trump may be similar to the messages they’ve heard from their fathers, their brothers, their husbands. They haven’t been given the message that they do matter.”

Absolutely. Lena can be a bit artless, but her aim is true.

I live in the Deep Dirty South. Southeast Tennessee, an hour and 45 minutes drive north of Atlanta. One of my friends lives next door to snake handlers and it only takes 50 minutes to drive to my house in the burbs. Suburbs that are getting increasingly poorer and filled with people who are overworked, bullied and getting an average of $9 or $10 an hour.

There are no services here. No affordable daycare, no good mental health services or treatment centers for drug abuse, which is rife. There’s not an abortion provider within a 200 mile radius of where I live and schools still teach the oppressive lessons of abstinence-only education. Churches are everywhere, but not very accepting of people’s differences and struggles at all. Medicaid wasn’t expanded here and I fall in the gap since I have decided not to have children. Only mothers get help- and not much of it. The courts fight hard to not give people any type of disability or financial support when they need it. It’s an $8/hour town and everyone serves the tourists and gentrifiers. A trace of weed will put you in one of the worst private jails in the country.

 

This is why it’s so interesting for me to watch the rest of the country collectively plotz over losing rights I’ve never known! It’s all academic to me. Planned Parenthood might get defunded? I’ve never even seen one! Free women’s health services are scarce and/or underground here. All the “clinics” are propaganda studios set up to look like helpful people. They aren’t. We have a lot of Catholic-run hospitals too.

Lots of pundits immediately took a strongly worded stance against the working-class poor who supposedly ushered him into office. No one was surprised to see certain types of men in certain states vote for a human molotov cocktail, but coastal feminists seemed deeply shocked that educated (and not particularly poor) white women sold themselves out so enthusiastically.

edward-norton-fight-club
I am Jack’s complete lack of surprise.

I remained extremely, delusionally hopeful that Hillary, as much as I dreaded HER=>, was in the lead. I even felt a strangely nice, proud, floaty feeling for about five hours and went to see my mom and tell her I just voted for the first woman president – in America, that is. I felt the relief that many of us did after we cast our fateful votes in November.

BUT . . .

I was born and raised in the South and, as Dave Chappelle says, “I know the whites!” For instance:

blame-the-poor
At least they give each other orgasms down here.

I don’t actually know if Mount Pleasant is in the South, but that pretty much sums up the attitude people take towards those who, “don’t live their lives the right way.” I live next door to two old farts who are “one issue voters,” namely, the abortion issue. They also hate gays with a fiery vehemence that can quickly sour the meals my family occasionally invites them to. These are people who strictly limit the amount of time their grandchildren can visit – to almost never. It’s great fun.

And they sure as hell ain’t poor. But I have a feeling that these radical views are mostly the wife’s thing. Projected shame is still a sport for many bitter women.

shame
This woman would get more votes.

In a nutshell, women down in America’s steamy under-carriage haven’t been woke yet, and are still unable to see the conventions that bind them. It’s no guarantee that every woman who even goes to college will “encounter” the right reading material or social awareness groups.

More insidiously, there persists a culture of religious sexual shaming coupled with highly sexualized media. Women are still under-represented in positions of power and are socialized to compete with perceived scarce resources among themselves. Gender expectations remain very binary in red states. Only two years ago I still thought of myself as only competent enough to do secretary-like work.

When oppressed women (who don’t know they’re oppressed) see a woman like Hillary Clinton who “thinks she’s all that” while genuinely being a deeply flawed candidate “get above herself” they will balk and gladly vote for a buffoon who only reflects the same sexist attitudes the men they love possess. Add in all the years of Fox News explaining how Hillary is the worst human female to ever stride about in public discourse, and you’ve got a bunch of women who are going to vote along with their husbands for Trump despite any “locker room talk.”

The more misinformed you are, the more likely you are to be unable to see the various types of discrimination that affect you personally.

While I have not been able to find any  numbers on the percentage of single (or divorced, widowed, or gay) women who voted for Trump over Hillary, most post-election articles site these stats:

 

atlas_r1fJrpg-g@2x

atlas_rJb_Baebg@2x

The differences in education are important and clear, but what they indicate under the surface, where most female oppression takes place, is that education is important for women to have so they can “have their consciousnesses raised” as our Boomer feminist forebears would say. A lack of education in a woman’s life leads to increased financial dependence on traditional gender roles. In other words, the less educated you are, the more likely you are to be unable to see the various types of discrimination that affect you personally. (It’s interesting to note that more non-educated black women voted for Clinton than educated black women.)

Rather than blaming less educated, older, and married women for putting Trump in office, we need to publicly acknowledge that women are intimately oppressed in America to a degree that drastically affects our elections as well as other American institutions.