Understanding the Challenges of Housekeeping with Disabilities

The Emotional and Physical Toll of an Untidy Home

Why Hiring Professional Cleaners Makes a Difference

1. Reducing Physical and Mental Strain

2. Creating a Healthier Living Environment

3. Boosting Mental Health and Confidence

4. Reclaiming Time and Energy

5. Customizable and Accessible Support

How to Choose the Right Cleaning Service

The Long-Term Benefits of a Clean Home

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“Paul* is autistic, you know,” she said. “He won’t ask you for anything, but if you go up to him, he’ll respond to you.”

“He’s autistic?” I said. “Homeless and autistic? That’s got to be rough. He’s especially vulnerable out here.”

“I know,” she said. “That’s why we watch out for him.”

It was such a simple exchange, and yet it broke down every stereotype about homeless people out there — that they’re all lazy bums, that they’re all criminals, that they’re all dangerous, and that none of them are fit to be in community with the rest of us. I have not found the average homeless person to be lazy, criminal, or dangerous; in fact, I have met a number of kind, caring, and thoughtful people. I’ve had conversations about politics, religion, disability, and art, and I’ve seen more than one example of people looking out for one another.

It always takes my breath away when people in crisis look out for one another. It reminds me of the goodness of people, and how we can care for one another, even in dire circumstances. I wish we did more of it. The world would be a kinder and more life-affirming place.

*a pseudonym

© 2014 by Rachel Cohen-Rottenberg

How do you define activism?

I’ve been chewing on this question for awhile. It’s come up for me lately in the context of my graduate course. We are being asked to talk about the social relevance of our work, with an eye to bringing together theory and practice.

I find myself balking at the dualism of theory and practice. Surely, at least in the case of disability rights, disability theory is essential to thinking about how to solve problems, change cultural assumptions that lead to discrimination, and enable people to heal internalized ableism. I’m not sure that, when it comes to oppression, there really is a useful distinction to be made between thought and practice; after all, analyzing and critiquing oppressive norms like racism and ableism is part and parcel of creating change. For myself, reading disability theory has enabled me to move through discriminatory situations with a great deal more consciousness about what is actually going on (i.e. that it isn’t about me and “my problem”), and to therefore advocate for myself more effectively. When I can do so, not only do I help myself, but I also serve notice to people that the next disabled person who comes in the door may very well be prepared to do the same.

Perhaps the real issue isn’t the difference between theory and practice, but audience. For example, if academics are writing theory and it never goes beyond other academics and the pages of academic journals, then it cannot have an impact on ordinary people who need new frameworks in which to operate. This is a significant problem in academia. Except for my current graduate program, which is interdisciplinary and therefore oriented toward problem-solving, my experience in the field of humanities has been to be fired up with passion and outrage about the injustices of the world, only to hit the hard brick wall of the institution, which provides few opportunities for any sort of real-world practice. In fact, it was the presence of that wall that drove me out of academia for 25 years.

But my question about what constitutes activism goes far beyond questions of theory and practice into the mode of activism itself. For me, writing is my primary mode of activism, because it’s the way in which I communicate most effectively. It’s not the activism of talking to my legislators or organizing protests. It’s a quieter activism.

It’s the activism of replying to emails from parents, who ask about sensory issues, or about how to interpret their kids’ behavior, or about why certain language hurts.

It’s the activism of running the Autism and Empathy site, smashing stereotypes, and giving a place to voices that are all-too-often silenced in the popular media, in autism organizations, and in the scientific community.

It’s the activism of reflecting on my life, on my reading, and on my experience in a way that speaks to people who are just finding out that others feel as they do.

It’s the activism of building bridges with parents by letting people know that just as I need respect for my feelings and my process, so I will give them respect for theirs.

It’s the activism of creating a safe space on my blog, in which people who have never known safe spaces can express themselves without fear of being attacked for their perspectives.

It’s the activism of lifting up my voice and speaking out against murder, and abuse, and cultural violence against disabled people.

There are so many of us who cannot talk with our legislators, or organize protests, or do so many of the things that we tend of think of as activism. I am beginning to realize that defining activism is those ways is much too narrow. Of course, all those things are important. But they are not the only way to make change, and defining activism in those ways is to give in to ableist notions of what sort of action is worthwhile and what sort is not.

The fact is that it’s all activism. Every single piece of it.

Every disabled person who has the courage to ask for the accommodations they need at school or in the workplace is an activist.

Every disabled person who comes out of the closet and says, “This is who I am,” is an activist.

Every disabled person who works to defends his or her psyche against a steady onslaught of devaluation and dehumanizing messages is an activist.

Every disabled person who shares the words of another disabled person, and thereby helps to create a network of mutual support and pride, is an activist.

How could it be otherwise, when simply being disabled and loving our lives is a radical act?

© 2013 by Rachel Cohen-Rottenberg

As many of you know, I’ve done a lot of work critiquing research into autism and empathy — both in my academic life and online at my Autism and Empathy site. One of the driving factors behind this work was an experience I’ve been afraid to talk about. To put it as briefly as possible: the research conclusions surrounding an alleged lack of empathy in autistic people made me question when I am really empathetic at all, and they filled me with doubt and dread for a very long time.

I’ve spent much of my adult life describing myself as an empath, and I have always read emotional and social process very well. But then my autism diagnosis came along and voila! I was supposed to be deficient in empathy. In fact, I read study, after study, after study showing that autistic people have an empathy disorder, and the cold voices of authority started getting into my head. That was bad. Very bad. What Sartre wrote about the Jewish people applied equally well to me as an individual:

“They have allowed themselves to be poisoned by the stereotype that others have of them, and they live in fear that their acts will correspond to this stereotype.” (Sartre 1960, 95)

“Poisoned” is right. I was sick with fear and doubt. A year or two ago, I finally got up the courage to check the whole empathy question out with the people who know me best: my husband and my kid. I started with the kid, who was still a teenager at the time. I said, “Ash, do you think I’m empathetic?”

Ash looked at me in a way that only teenagers can look at mothers: with a mixture of impatience, love, and something bordering on anger for wasting their time. With an eye roll, my kid spoke the following immortal words;

“Mom. YES. You are very empathetic. Exhibit A: MY ENTIRE LIFE.”

I felt relieved. Later in the evening, after my husband came home, I related my conversation with Ash and poured out my relief as he made himself toast at the kitchen counter. His response? He was uncharacteristically brief. “Good,” he said. “No need to ask this question again.”

Somehow, those two conversations allayed my doubts. I couldn’t write about it for a long time, though. I couldn’t acknowledge publicly the kinds of doubt the research had raised in me. But I can do so now, because I’ve come to understand that I wasn’t just having an experience of personal insecurity. I’ve come to realize that this kind of doubt is common for people in all kinds of marginalized groups. I’ve finally seen the ways in which those with cultural authority speak for us, ask us to prove our experience with numbers and graphs and research papers, and then tell us that our experience means nothing because it doesn’t match their findings.

The rather obvious conclusion to draw from research findings that don’t match reality is that the research findings are wrong, but of course, that rarely happens. The research findings take on the authority of truth, and the experiences of people who actually live in the bodies being researched mean very little.

Put another way: The truth means very little. The story that is constructed, however, means everything, and we find ourselves spending massive amounts of energy arguing against the story, both within ourselves and with everyone else. Patricia Williams writes about studies on race in a way that rings true for me as I recall all the many hours I’ve spent refuting autism research:

“One of the great difficulties of pseudo-science is that it is so hard to refute just by saying it isn’t so. The logical structure — if not the substance — of pseudo-science posits what purports to be fact; it requires counter-fact to make counter-arguments. Black people find themselves responding endlessly to such studies before we can be heard on any other subject; we must credentialize ourselves as number-crunching social scientists quickly in order to be seen as even minimally intelligent… Real numbers, real science — it’s what school teaches us to revere. And it makes anyone who knows the great messy, unprovable contrary, who knows the indecipherable complexity of black or white people, who knows the reality and the potential of all humanity — us silly egalitarians — it makes us unintelligent, uninformed, powerless, and naïve.” (Williams 1998, 49-50)

“Real numbers, real science” — how do these things even begin to compete with the delicious, messy, complex, living, breathing nature of human experience? They don’t. They can’t. They can never even come close. They only put us into hierarchies: black/white, normal/abnormal, able/disabled, and so many others.

Do I regret that I spent so many hours critiquing the research? Do I wish I’d said instead, “To hell with your studies, to hell with your questionnaires, to hell with the careers you’ve built on the backs of people like me”? In some ways, yes. But in other ways, I am glad to have been able to spend some time in the belly of the monster, because I got to know its way of being very, very well and I got to see how very barren the belly is.

The monster doesn’t scare me anymore. It’s been banished. And when people try to raise the monster back up, I find myself wondering why they’re wasting their time believing in an apparition.

References

Sartre, Jean-Paul. Anti-Semite and Jew. New York, NY: Grove Press, 1960.

Williams, Patricia. Seeing a Color-Blind Future: The Paradox of Race. New York, NY: Farrar, Strauss, and Giroux, 1998.

© 2013 by Rachel Cohen-Rottenberg

So, in addition to leaving these communities, I will be letting go for awhile of any online activities that don’t directly involve my academic work and my internship. Because I began this blog as part of my graduate program, I will post to it if I’ve written something particular to the focus of my coursework, but otherwise, I will be taking a break.

I have already let people know on my private Facebook page that I’m taking a hiatus, but I’m realizing that I have many more readers than I have Facebook friends, and I need to say something here about what is going on. I could just leave a brief announcement to let you know that I’m taking a break. But the very reason that I’m withdrawing from participation is the very reason that I need to say something more.

I’ll put this as succinctly as I can: in the autism and autistic communities, I have become afraid to speak my truth. And so, as you can imagine, writing this post is very, very difficult.

There are many reasons that I have come to this place, and it didn’t happen suddenly. There was no one event, no one crisis, no one person who has brought me here. It was an accumulation of many things.

Part of it has to do with personal attack. In the past four years and a half years of blogging and activism, I’ve gotten hate mail, I’ve been publicly maligned, and I’ve been privately trashed. I’ve had people accuse me of things I haven’t done and of intentions I don’t have. It’s not that I mind people having at my work. That doesn’t bother me. When I put my work out there, I expect that people will be all over the map with it. It’s that I mind people having at me.

So I tried to minimize my involvement as much as I possibly could without leaving altogether. I turned my attention to cross-disability issues. I ended any and all political involvements. I stayed well outside the blog wars. I stopped posting to autism blogs and forums.

It hasn’t mattered. The us-and-them lines in the autism and autistic communities are so complex, and they intersect so frequently, that it is nearly impossible to stay outside of them.

No, not nearly impossible. Absolutely impossible. I cannot figure out how to stay away from one line that someone has drawn in the sand without finding myself on the wrong side of another line someone else has drawn in the sand. The result is that there is no safe space on which to stand — no place in which I can simply speak without risking attack.

It’s not that I care what people say about me. People talking about me on the Internet has no discernible impact on my life. I haven’t lost any friends or the respect of people who love me, and I don’t expect to. It’s that I’m tired of being in the gale force wind of these attacks. I’m always bracing against them, and I don’t have the energy for it anymore. When the attack comes, I don’t respond to it because I know that addressing it will only start another round, and I absolutely refuse to go there. But the toll it’s taken on me to restrain myself from responding has been fierce, and I’m very tired.

It’s the whole culture of attack that’s become so wearying. It’s not just that I’ve been attacked personally. It’s that I watch people attacking each other on a consistent basis. There is very little restraint. In fact, there seems to be a belief that to liberate ourselves from our own pain, or stress, or isolation, or oppression means that everyone can say whatever they want, however they want, to whomever they want, about whomever they want, any time they want. In fact, no-holds-barred expression seems to be the only rule of engagement we have here.

I talk about people having a dialog with civility and respect, and I feel very old and quaint and irrelevant, and that’s on a good day. On a bad day, I’m accused of trying to shut people up — which, in my personal value system, is one of the worst accusations anyone can launch against me. I’m accused by parents of trying to get them to sugarcoat their pain and stress and fear. I’m accused by autistics of attempting to silence them about their oppression. Basically, the message is that I’m either a mindless idealogue attempting to suppress the voices of parents, or I’m a privileged asshole attempting to suppress the voices of oppressed people.

Guess what? I’m neither. Those are someone else’s constructs, and they have nothing to do with me.

I’ve said it many times, and I’ll say it again: You can speak your rage and your pain and your grief without inflicting blunt force verbal trauma on other people. Really. I swear to God, you can. I’ve been doing it for many years. Repression is not even in my vocabulary, but neither is letting loose in the public square.

I’m not all about respect and civility because I’m trying to silence people. In fact, quite the contrary. I’m all about respect and civility because it’s the only way to guarantee that people will feel safe speaking at all. When I walk into an online forum and see people attacking one another, I stop participating, because I know that whatever I say, someone will have at me. It’s inevitable. When people are just letting loose, the anger starts to miss its target and everyone is fair game. I’ve watched it happen to others, and it’s happened to me. Anyone involved in the autistic and autism communities knows exactly what I’m talking about.

And that means that anyone who doesn’t have the stomach for being attacked, and who doesn’t want to watch other people be attacked, is going to go silent. There is no room for a mediator, no room for someone to be ignorant (God forbid you don’t have it all figured out before you walk in), no room for people to try to just work out the mess in their heads and come to some understanding about what the hell is going on in their lives, without the risk of being told You’re not like my child, so shut up or Check your privilege, you ableist asshole or something else that is sure to shut down conversation as surely as I’m sitting here.

It’s not that people who say these things aren’t sometimes right in the substance of their criticism. Sometimes autistic people say things about autism that have no relevance at all to what a parent is dealing with. And yeah, sometimes parents say things that are crappy and ableist and destructive. Of course. Yes. No argument there. But having at people doesn’t move along dialog or create community. It shuts it down and fractures it.

And this is why I’m leaving. Because we’re all carrying a heavy burden — every one of us. We’re all carrying burdens that no human being should have to carry alone. And there are people who have given up on speaking about their burdens and their grief and their pain and their isolation because risking attack — and watching people attack one another — brings one more burden that they simply cannot bear to carry.

I am now one of those people.

Everywhere I go in my life, I see suffering, and isolation, and indignity. And I know that what I see with my own eyes is happening everywhere. For all of the breath-taking beauty in this world, the suffering that we inflict on one another makes me wonder whether Huxley was right, and whether this planet is really just another planet’s hell. For me, the only thing that makes living in a world of suffering bearable is the belief that someone, somewhere will treat you with dignity and civility and respect, and that you can do the same. That is why there are words for these things — they create islands in time that make the suffering of the world bearable.

We don’t have enough people holding those spaces in either the autism or the autistic communities right now, and because we don’t have them, people are afraid to speak their truth. And, as far as I’m concerned, any community in which people are afraid to speak their truth really doesn’t merit being called a community, because being able to speak without fear is the very basis of community.

So I can’t stay. I have to rest for awhile, and I have to create those spaces of civility and respect elsewhere. It’s the only thing that makes trudging through this world of pain worth the doing.

So please take care of one another. And please stop having at one another. And please just talk and listen to one another. Please.

© 2013 by Rachel Cohen-Rottenberg

“This is a great day for medical science,” said Dr. Ernest Eagerly, Director of the Department for the Medicalization of Humanity at Albatross University. “Our research team sorted through a myriad of studies linking autism to everything from pet shampoo to freeway traffic to creases in the placenta. After controlling for variables in the research such as usefulness, rationality, shameless self-promotion, and general hysterical posturing, we determined that all of the studies had one thing in common: people with autism are alive.”

But that’s not all, according to Dr. Eagerly. “Not only are people with autism alive, but their parents are also alive — a clear and dramatic indicator of an underlying genetic mechanism. This new understanding opens up exciting avenues for treatment and cure. If we can locate the gene that controls for being alive, we might just crack the autism puzzle once and for all.”

Autism is a neurodevelopmental disorder that has stolen the souls of 1 out of 88 adorable children who otherwise look completely human. There is no cure.

While the latest research findings are dramatic, experts caution the general public that it’s important to be circumspect. “Being alive takes many forms and one has to be on guard against them at all times,” said Jenny McWhatsHerName, spokesperson for Only My Generation! (OMG!), an organization dedicated to the proposition that an epidemic of aliveness began with the development of vaccines. “Aliveness is not just a simple question of breathing,” she said with a giggle. “I mean, duh! You can’t simply hold your breath until you pass out and think that you’re going to be able to beat this autism thing! Laughing, loving, feeling at ease with your life — these are all warning signs.”

What’s the bottom line, according to OMG!? “Be afraid,” she said. “Be very afraid.”

Dr. Eagerly agrees. “We have found that the best defense against a diagnosis of autism is to sit completely skill and live in abject fear. I know it seems extreme,” he added, “but what’s the alternative? Enjoying your life? That will only result in hordes of people with autism being released upon an innocent and unsuspecting public.”

Because the only known remedy for being alive is dying, researchers stress that a cure may not be in the offing for several years. “It’s a tricky situation,” said Dr. Eagerly. “How do we separate autism from being alive, when the two are so closely linked?” He lauds the efforts of organizations like “OMG!” that suck the will to live right out of autistic people and their families.

“These organizations are on the cutting edge,” he said. “Just keep sending them your money.”

© 2013 by Rachel Cohen-Rottenberg

No, I’m not sick of Autism the Condition. That I can live with, although it’s a complete pain in the ass sometimes. But what isn’t?

So that’s not what I mean. I’m talking about everything that isn’t actually the condition:

Autism The Event.

Autism the Tragedy.

Autism the Gift.

Autism The Epidemic.

Autism the Blessing.

Autism the Puzzle.

Autism the Next Step in Human Evolution.

Autism the Reason to Pound People Over the Head Because My Life Sucks Worse Than Yours.

When it comes down to it, what am I really sick of? I’ll tell you: I’m sick of autism The Condition That Must Be Interpreted.

Do we really need one more study about what causes autism? Do we really need one more article about how people with autism rock your socks off? Can we stop with the inspirational memes about autistic geniuses Who Overcame The Odds And Beat Autism Into The Ground? Can we call a moratorium on posts about how autism is an Epidemic of Tragic Proportions Never Before Seen By Human Beings? Can we please, please, please stop talking about autism as though it’s actually a thing that stands alone from actual people?

I know I’m old and jaded. Well, no, not really. Yes, I’m old. But I’m not jaded. I’m the opposite of jaded. I long for the time before autism was A Thing. I grew up before autism was A Thing. I grew up just being, you know, a kid. Just a kid. A kid with lots of what are now politely called issues, most of them unarticulated, but just a kid. I played baseball. I climbed trees. I stayed up till all hours. I read lots of books. I was quiet. I was kind. I had lots of plans for the future.

It would have been good to have articulated my issues. Seriously. I wish someone had helped with that. I wish someone had taught me how to take care of the body and mind that I had been given, rather than the body and mind that everybody thought I’d been given. I wish someone had given me a language for the particulars of how my mind and body work so that I wouldn’t spend the next 50 years of my life driving myself into the ground.

Really. I do wish for all that.

But I am so, so glad that autism wasn’t A Thing then. So glad. Because now it’s A Thing — A Thing that shadows me wherever I go. A Thing that I have to decide to disclose or not. A Thing that’s like a big box that I’m supposed get in and stay in and say This is Me. I often wonder who made that box, and I often wonder why they made that box, and I often wonder why people spend so much damned time talking about that box, worrying about that box, describing that box, and making money off that box — and spend so little time listening to and providing support to the people they’ve put in that box.

And sometimes, I wonder how the hell I even got in that box at all. I don’t recall that box even being there for the first five decades of my life. Did it just grow up around me and enclose me? Or did I jump into it, not realizing how hard it would be to get out — not realizing how hard it would be to say, in a world of boxes, that boxes feel suffocating?

My therapist in Brattleboro used to say that all labels are a box. Labels can be useful — for services, for finding kindred spirits, for getting support. But when it comes down to it, the support really needs to be about very particular things, not about the box, because all of us have very particular needs. None of us look like what’s advertised on the outside of the box — not completely. For me, the main disability is auditory. For someone else, it’s tactile. For someone else, it’s multi-sensory. For someone else, it’s a whole other constellation. You can’t put all that on a box, no matter how big it is. The label will always be a vast oversimplification.

I’d like to get out of the box now.

I’d like to just be Rachel again.

Just Rachel. Rachel who needs quiet in order to hear. Rachel who needs clarity in communication. Rachel who sees word pictures in her mind. Rachel who loves organizing, and who has a passion for so many things, and who can focus like a laser beam on any of them. Rachel who never stops thinking. Rachel whose heart is broken by the world on a regular basis. Rachel who fiercely hopes for better.

That Rachel. The one I’ve always been. The one outside the box.

© 2013 by Rachel Cohen-Rottenberg

The intent of the Neurotypical Awareness memes is not to parody individuals or their concerns. For instance, I’m not saying that raising an autistic kid is easy, and I’m not saying that being autistic is easy, and I’m not saying that people should be quiet about it. Physically, socially, economically, emotionally, and in many other ways, it can be very difficult — because of the nature of the condition and because of the obstacles that the world puts up. What I’m doing is parodying representations of autism — by professionals and organizations and media outlets — that constantly beat the drum about how autism is nothing but tragedy and grief and loss and deficit, or conversely, a grand opportunity for Special Inspirational Achievement and Overcoming the Odds.

I don’t think those extremes help us. And those are generally the extremes at which most mainstream autism representation works. The same is true for mainstream representations of most — if not all — disabilities.

It’s clear that a number of people feel uncomfortable about these memes. My feeling is that this discomfort is a good thing. If people are uncomfortable when reading them, then what I’m doing is effective. People should feel uncomfortable when the shoe is on the other foot and pejorative attitudes are directed at them or at those they care about. I want people to have the experience of how it feels for disabled people to deal with these kinds of messages day in and day out.

The problem, from my perspective, isn’t that people get offended. The problem is that people get offended and then don’t question why they’re offended and why I’d want them to feel that.

Several people have said that I’m just being negative. But that’s not me. I don’t do negative for the sake of negative, and I have no interest in paying back the non-disabled world for the way it treats us. I don’t think about life that way. My only interest is to shine a light on our cultural memes about disability and on their impact.

In other words, this isn’t therapy. It’s social commentary. And if it makes you uncomfortable, then I’m doing my job.

© 2013 by Rachel Cohen-Rottenberg

Apparently, the folks at Autism Speaks, in their infinite wisdom about all things autism, decided it would be an excellent idea to spend good money (you know, the kind that might actually go for supports and services and other boring and unimportant things) on a useless piece of technology. How useless?

Very useless. This technology allows people to imagine how parents might feel when their autistic kids don’t make eye contact with them.

Yes. It’s a simulation exercise to make people aware of the utter heartbreak of having a child who struggles with eye contact. Except, of course, in this video, the child isn’t struggling. The child simply does not make eye contact at all. Ever.

Take a look:

Source: Autism Speaks, Ad Council

What’s this video about? It’s about how other people feel about autistic people.

It’s not about how autistic people feel when others try to make eye contact. It’s not about why autistic people have difficulty with eye contact. It’s not about why autistic people often avoid eye contact. It’s not about why eye contact can be emotionally and neurologically overwhelming for autistic people.

No. It’s all about what a bummer it is for others that we have this disability at all — if lack of eye contact can even be called a disability. In some cultures, too much eye contact is considered rude. Are people in those cultures crying their eyes out over a lack of sustained eye contact? It’s doubtful.

But of course, Autism Speaks’ message isn’t about understanding. It’s about awareness. Of how other people feel about us.

And it’s utterly shameful.

© 2013 by Rachel Cohen-Rottenberg