Annoyed by Autism Mom Hoodie

Content Note: Ableism, Autism Stereotypes, Caregiver Stress, Disability Stereotypes, Disabled Child Murder, Sexism

A Facebook friend, a mother with an autistic child, called attention on her profile last night to an “Autism Mom” hoodie that she’d seen advertised:

Blue pullover graphic hoodie with "Autism Mom" in prominent blue block letters at the top of a block of text in different colours of block text covering the front. Puzzle piece logo in red and yellow under the text, just above the hoodie pockets. Keyword: Autism Mom

Image Description: Navy pullover hoodies with large block of writing on the front in lines of yellow, red, and light blue, with a puzzle piece logo in red and yellow at the bottom.

It’s hard to read the writing on the hoodie. It says:

Autism Mom

A Superhero With

Messy Hair, Bags Under

Her Eyes, Stung Out

Nerves, Who Has A

Happy Child Because

Of All That She Does

The puzzle piece icon is underneath the writing.

My friend’s comments on the hoodie indicated that she wasn’t sure how she felt about it. I have some thoughts (obviously)

First of All…

Let me first say that, having worked in family support positions, I realize that parents of autistic children (and children with other disabilities) are often under enormous strain. I remember more than a few meetings with parents about their children where I changed course and said, “You know what? Your child’s actually doing okay right now. I’m kind of worried about your stress level. What can we do to help you?” And why wouldn’t parents feel stressed? Funding is constantly being cut. Wait-lists for supports get longer and longer. Even crisis services are difficult to access. And I know from my work doing planning for youth transitioning into the adult system that parents’ fears for what will happen to their adult children after they’re gone are ever-present and very difficult to deal with. I felt these fears too, seeing how little was available for the young people I was supporting. But I got to go home at the end of the day. Parents don’t get to do this.

I would never want to come across like I’m minimizing the potential stress involved with raising a disabled child. I’ve been privileged to see the genuine joy that families take in it, and working with those families was the best part of my job when I was in the field. But the unique challenges and stresses also need recognition.

It’s difficult to strike that balance between acknowledging the challenges involved in raising a disabled child and validating parents’ legitimate needs of frustration and getting across in general a more disability-positive in general that all parenting is difficult and that children are children — disabled or not, some have more complex needs than others.

This Autism Mom hoodie doesn’t strike that balance well. At all.

More specifically – What was Autism Mom Thinking?

This Autism Mom hoodie contributes to messaging that’s proving terribly dangerous for autistic children, who are murdered by parents and caregivers in shockingly high numbers. It says that autistic children cause their mothers nothing but grief and that autistic children can’t be happy unless mothers have worked themselves into high levels of stress and potential ill health. It reinforces the general stereotype that those who parent or do caretaker or support work for disabled people are “saints” because our needs are so difficult to meet and the specific messaging (that Autism Speaks has been shoving in our faces for so long) that autism is a evil entity that steals children and destroys families and that must be eliminated at all costs.

It’s also terribly shaming. Children (autistic and neurotypical) can be unhappy for a lot of reasons. Sometimes the reasons can be very difficult to address and can involve a wait-list for supports and/or treatment, a waiting period for treatment to take effect…the treatment may not work, and everyone has to start over…and some families have access to supports and treatments that others don’t, for a variety of reasons. But this hoodie would have mothers of autistic children believe that if their child isn’t happy, it’s because they aren’t trying hard enough. That’s a horrible thing to have pushed in your face when your child is suffering and you really are doing everything that you can, and it makes me furious.

And what about autism dads? Fathers don’t care about their autistic children and work hard to try make them as happy as possible? Ugh. This hoodie makes me more and more annoyed the more I look at it.

Doubtless some people will think I’m overreacting, but I’m a writer…words matter to me. Marketing fail, whoever made this shirt.

On An Unrelated Note

American friends, you’re probably aware that you have an election coming up.

I’ve been addicted to CNN for the past six weeks. I’m to the point where the thought of Donald Trump as President makes me feel physically ill. I’m begging you to keep him out of the White House.

Please.

Anyhoo. Have a great weekend and a happy Halloween!

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As America Prepares for Hurricane Harvey, a Look Back: “Hurricane Matthew, Disabled People, Emergency Planning and Vulnerability”

I wrote this in 2016 about Hurricane Matthew (obviously) but am pinning it to the top of the blog for a bit because Hurricane Harvey has got me thinking about these things again.

Please stay safe, American friends.


Content Note: Ableism, Weather Emergency, Disempowerment, Inaccessibility

Blue, circular sign that says Evacuation Route in white block letters is displayed against a blue sky, right above a blue sign with a white arrow indicating to keep going straight. Keyword: Hurricane Matthew

Image Description: Blue, circular sign that says Evacuation Route in white block letters is displayed against a blue sky, right above a blue sign with a white arrow indicating to keep going straight.

***

Because of the US election, I’ve been watching a lot of CNN these days. Last week I saw part of a press conference given by the governor of North Carolina, talking about what people needed to do to prepare for Hurricane Matthew as it moved up the coast from Florida. I was pleased to see that there was an ASL interpreter right beside the governor. And it got me thinking, yet again, about disabled people and emergency planning.

The only true weather emergency I’ve ever experienced was the ice storm that hit Kingston, Ottawa, and Montreal in 1998. I was living in a large house with 6 other girls at the time. I hadn’t acquired my disabilities yet. We were in our house the night of the storm, we spent the next night with my housemate Karen’s relatives because there was no power or heat in our house, and most of us left town the next day once travel because safe. If we hadn’t been able to stay in the house the second night, we would have gone to a shelter. Not a big deal.

It might have been if any of us had been in a wheelchair, or dependent in any way on nursing care, or on any medical supports that required electricity or water. Even at Karen’s relatives’ house, the power was still flicking on and off during the night that we stayed there.

But we were young, healthy, non-disabled, and immensely privileged. We didn’t give a second thought to what we might have done if we hadn’t been able to access help that we needed.

I thought about that last week, as I read an article by Direct Relief America about groups that will find it most difficult to get help during Hurricane Matthew. As I read it, I found myself getting alarmed; it was suddenly clear to me that it’s highly likely that the people most at risk during weather emergencies like Hurricane Matthew are disabled people.

Vulnerability During Weather Emergencies

Direct Relief identified four factors that put people especially at risk during Hurricane Matthew:

  • Compromised Mobility — The article discussed mobility not only in terms of a person’s ability to physically move, but also in terms of access to transportation and to transportation infrastructure (roads, bridges, etc.)
  • Poverty — Poverty tends make people more vulnerable doing weather emergencies like Hurricane Matthew in a number of ways, all of which can interact with each other to make the effect of any one (or all of them) more pronounced.
  • Health — People who take a lot of medication are vulnerable during weather emergencies because they may have to evacuate quickly and forget medications that may be (or become) difficult to get. Power outages may also mean that medications that require refrigeration will spoil. The Direct Relief article does talk about physically disabled people potentially not being able to evacuate, but doesn’t discuss the potential seriousness of being without required attendant care either in a home or a shelter. Direct Relief also identified hearing and visual disabilities as a potential barrier to receiving up-to-date evacuation information.
  • Language Barriers — The effect of language barriers begins with pre-evacuation announcements and can affect how entire communities receive important information. They can also “prevent residents from communicating with dispatchers and keep doctors from talking with patients in a triage tent.”

The article doesn’t talk about this, but in the high-pressure environment of a weather-related emergency like Hurricane Matthew, front line and medical staff may be less sensitive to the unique needs of disabled people (such as intellectually disabled people who may need more support to fully understand a procedure before consenting to it.) People with hidden disabilities may also find evacuation situations very difficult, as strangers may assume that they can meet expectations that their disabilities don’t allow them to, particularly in stressful times.

The Hurricane Matthew Venn Diagram That I Can’t Draw

I started thinking about all of this, and I know that the best way to show it is to draw a Venn diagram showing that these vulnerabilities intersect with each other and all intersect at disability, making disabled people one of the mostvulnerable groups in America in a weather-related emergency like the Hurricane Matthew landfall in Florida. I’m not very good at graphics, though, so I’ll have to try to explain it!

Compromised Mobility — It’s easy to see why compromised mobility is potentially a disability issue during an evacuation order. The mind goes immediately to wheelchair users (understandably), but people using canes or walkers, who are unsteady, or who experience pain when walking may have trouble moving quickly to get ready for evacuation or may be concerned that shelters in their area aren’t accessible (I’ve heard stories from friends in US about weather emergency shelters that weren’t, despite assurances that they would be.) Some disabled people can’t drive and must worry about how they will actually manage the mechanics of evacuation; this is especially true for disabled people who are very isolated from their communities, as we know often happens. Compromised Mobility intersects with Poverty — people living in poverty are less likely to have a reliable vehicle, which makes them potentially less likely to follow evacuation orders.

Poverty — In 2014, the poverty rate for disabled adults in America was 28% — over twice the rate for non-disabled adults. This 28% will potentially experience the vulnerabilities to especially hurricane emergencies, as identified in the Direct Relief article:

  • A tendency to live inland, in communities more vulnerable to mudslide and flash flooding than coastal regions (Intersects with Compromised Mobility, potentially Language Barriers)
  • Reduced ability to remain prepared for the expenses of a quick evacuation (Intersects with Compromised Mobility, Health)
  • Available emergency medical services quickly become overburdened (Intersects with Health)

When you have money, you have more options when you’re planning for these sorts of emergencies. Many disabled people do not have that sort of money to put away.

Health — I wrote about an evening where we lost power in my apartment building that made me question how well I’d get along in my apartment if the power was off for an extended period of time. I didn’t have a cellular phone at the time, and my landline ran through a wireless phone connected to base that didn’t work without electricity. I couldn’t send or check email. I was cut off. My father was in the same boat. Not a great situation for two people with health issues. I now have a cell phone and an emergency plan.

But there’s not much to it, especially in terms of evacuation, I’ve lived in my current town on-and-off for thirty years, and I’ve never known of an evacuation order being issued. But (intersection with Compromised Mobility) I have a health condition that prevents me from driving (a seizure disorder). If left to my own devices to evacuate, the shelter would have to be within 1.5 km (what I can walk) or a fairly short cab ride, and I could only take what I could fit in my travel backpack (probably enough for a week away from home — I’m a very good packer.) I don’t have meds that require refrigeration, I don’t require attendant care, and I could manage a non-accessible shelter if I had to. If I was to have a seizure, I generally have warning that it’s coming and know how to handle it and don’t require medical attention afterward.

I consider myself very, very lucky. It wouldn’t take much for many disabled people, considering associated health conditions and required medications and daily supports, to find Health barriers to evacuation overlapping significantly with associated with Compromised Mobility and Poverty, interacting with each other and making personal emergency response strategies difficult to both plan and implement.

Language Barriers — I think that Direct Relief was thinking about spoken language barriers when it wrote this section, but language barriers are certainly a potential barrier for disabled people — just because I saw an ASL interpreter at the Hurricane Matthew press conference doesn’t mean that all people on the teams involved in the evacuation process are ASL fluent, or familiar with assisted language technology, or even schooled enough in basic disability etiquette to know basic best practices about communicating with a hearing impaired person or an intellectually disabled person.

I have written in the past about my friend Ivy, who is intellectually disabled and also has a pronounced speech impairment. Even after our many years of friendship, I sometimes don’t understand what she’s trying to tell me, and we have to work it out together. Communication with officials and accurate understanding of messages about evacuation are crucial, and language barriers for disabled people are potentially just as difficult to navigate as for those who don’t speak the oral language(s) of the area.

Putting it Together

Are all disabled people vulnerable in weather-related emergencies? No. But there’s definitely a segment of the community that are going to fit into that place on the Venn diagram where Poverty, Compromised Mobility, Language Barrier, and Health all intersect, and those people are at grave risk of falling through the cracks in weather-related emergencies like Hurricane Matthew This means that people need to have personal emergency plans in place, but it also means that resources need to be available so that people can implement these plans.

It shouldn’t only be healthy, non-disabled people with the capacity to quickly and independently receive and understand all evacuation messages and the means to act on them promptly that can expect to get what they need to safely get through an emergency of any sort. This is particularly true in places where weather emergencies like hurricanes are common.

In all emergency planning, official plans need to address the needs of as many people as possible, including disabled people, who may face barriers on multiple fronts to getting to safety.

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