life threatening ableism

Medical red flags

Content warning: this post contains graphic descriptions of medical ableism. Proceed with caution.

snouted replied to your post:

Oh man yes and anyone who pushes you with THEIR goals (instead of working w you to push your OWN goals) is bad news.

realsocialskills said:

Yes, and that’s not mental illness specific either. Most conditions of any sort involve choices and tradeoffs.

For instance, if you go to a doctor for help with a functional issue and they keep pushing normalization-oriented surgery unrelated to your actual goals, that’s bad news. (“Here’s how we can make you look more normal” is not a good answer to “I’d like this to stop hurting.”)

If someone ignores your concerns about side effects, that’s also bad news. (Sometimes they will be entirely right that the benefits outweigh the drawbacks. But if they’re not listening or respecting you, that’s bad news.)

If someone calls you drug-seeking when you ask for help managing chronic pain, that’s bad news. If they only care about addiction risk and aren’t at all interested in treating your pain, that’s bad news.

If someone pushes something like “quality of life” in order to dissuade you from having treatment that is clearly necessary to your survival, that’s *really* bad news. (This happens to people who need feeding tubes or tracheostomies to survive, among other things.)

Medical treatment involves choices. A doctor who doesn’t think that your choices matter is bad news.

“I hope that I will live one heartbeat longer than she does”

Content warning: This post is about sentiments leading to murder of people with disabilities. Proceed with caution.

At an autism conference recently, I heard the father of a 20 year old autistic man say in his speech to the whole conference, “I hope to live one heartbeat longer than he does. I’m sure many of you feel the same way about your children.”

That sentiment gets people killed. If you are the parent of a disabled child and you say things like this, it is a matter of life-and-death importance that you stop talking this way. The father who said this is probably entirely correct that many of the other parents in the audience felt the same way. I have heard this sentiment expressed by many other parents of children with disabilities (not just autism.)

Parents who hope to outlive their autistic children are talking about people who, barring tragedy, will almost certainly outlive their parents. Autism does not limit lifespan; most autistic people should live to be old. If you hope to outlive your autistic child, it means that you are hoping that their life will be tragically cut short. It means you think they’re better off dead than they would be living without you. That’s dangerous.

It’s not true. Nobody is better off dead. It is not a blessing to die young. Expressing a desire for someone to die young is not love. (People who say this may well love their children in other ways, but this sentiment is not love.)

Please stop implying that your child will be unable to live and be happy after you die. People just like your child live on in adulthood after their parents die, and your child can too. And they will have a much easier time of it if you accept that they will outlive you, and help them to prepare for their life without you.

The only way it’s likely to live a heartbeat longer than your autistic child is if you kill them and then yourself. Many parents who feel this way do exactly that. And, even if you would never kill your child, people who are considering committing murder can hear what you say. If you say that you hope to live a heartbeat longer than your child, it makes the murder that is the only way this can plausibly happen seem like a much more legitimate choice. Don’t give potential murders that kind of encouragement.

In the disability community, we observe a day of mourning and read a list of people with disabilities murdered by caregivers.

The list is long. And it’s only a list of the names we know. There are many others who died without making the news. 

I hope and pray that your child never ends up on this list. I hope and pray that they outlive you and have a happy and meaningful adulthood. I hope and pray that this list never gets any longer. 

One murder is too many. Not ever again.

Under the cut is the (as of this post) current list of the names we know. In loving memory; may these murders be the last:

  • Tracy Latimer, 12 years old, gassed by her father in 1993
  • Charles-Antoine Blais,  6 years old, drowned by his mother in November 1996
  • Casey Albury, 17 years old, strangled by her mother in 1997
  • Pierre Pasquiou, 10 years old, pushed into the sea by his mother in 1998
  • Jim Helm, 27 years old, killed by his mother in a murder-suicide in November 1998
  • Daniel Leubner, 13 years old, burned alive by his mother in September 1999
  • James Joseph Cummings Jr, 46 years old, stabbed to death by his father in the institution where he lived in November 1999
  • Justin Malphus, 5 years old, beaten and drowned by his mother in April 2000
  • Gabriel Britt,  6 years old, suffocated by his father in March 2001
  • Johnny Churchi, 13 years old, strangled by his mother in 2001
  • Mark Owen Young, 11 years old, poisoned and then pushed off a bridge by his mother in a murder-suicide, September 2001
  • Brahim Dukes, 18 years old, starved by his stepmother in December 2001
  • Lilian Leilani Gill, 4 years old, strangled by her adoptive mother in March 2002
  •  Mitchell Dickson, 10 years old, slashed to death by his mother in June 2002
  • Dale Bartolome, 27 years old, killed by his father in a murder-suicide in July 2002
  • Jason Dawes, 10 years old, suffocated by his mother in August 2003
  • Maggie Caraballo, 38 years old, beaten to death by her sister in August 2003
  • Angelica Auriemma, 20 years old, drowned by her mother who first tried to electrocute her to death in 2003
  • Scott Olsen, 29 years old, starved to death by his sister in December 2003
  • Eric Bland, 38 years old, starved to death by his sister in March 2004
  • Scarlett Chen, 4 years old, drowned by her mother in July 2004
  • Patrick Markcrow, 36 years old, drugged and suffocated by his mother in March 2005
  • Tiffany Pinckney, 23 years old, locked in a basement and starved to death by her sister and brother-in-law in April 2005
  • Sarah Naylor, 27 years old, shot by her mother in a murder-suicide in September 2005
  • Ryan Davies, 12 years old, drowned after his mother caused him to fall off of a bridge in a murder-suicide
  • Christopher DeGroot, 19 years old, died of severe burns after he was locked in his parents’ apartment alone during a fire in May 2006
  • Katie McCarron, 3 years old, suffocated by her mother in May 2006
  • William Lash III, 12 years old, shot by his father in a murder-suicide in July 2006
  • Lakesha Victor, 10 years old, starved by her mother in August 2006
  • Marcus Fiesel, 4 years old, wrapped in heavy blankets by his foster parents and left in a closet to suffocate while they went out of town in August 2006
  • Ulysses Stable, 12 years old, throat slit by his father in November 2006
  • Brandon Williams, 5 years old, poisoned and beaten to death by his mother in March 2007
  • Criste Reimer, 47 years old, thrown from a balcony by her husband in 2007
  • Jared Greenwood, 26 years old, died of infected bed sores after being left in place and neglected by his mother in 2007
  • Francecca Hardwick, 18 years old, locked in a burning car with her mother in a murder-suicide in October 2007
  • Naomi Hill, 4 years old, drowned by her mother in November 2007
  • Shellay Ward, 7 years old, starved and neglected by her parents in November 2007
  • Maxwell Eyer, 2 years old, beaten to death by his father in December 2007
  • Xiao Fei, 20 years old, poisoned and suffocated by her mother in 2008
  • Calista Springer, 16 years old, chained to a bed and abandoned in a fire by her entire family in 2008
  • Courtney Wise, 17 years old, starved to death by her mother in February 2008
  • Ethan Scott Kirby, 3 years old, beaten to death by his mother’s boyfriend in August 2008
  • Jacob Grabe, 13 years old, shot by his father in 2008
  • Tom Inglis, 22 years old, died after his mother administered an overdose of heroin to him in November 2008
  • Christian Clay Jenkins, 14 years old, given an overdose of oxycodone by his father in 2008
  • Kyle Dutter, 12 years old, shot by his father in a murder-suicide in 2008
  • Lexie Agyepong-Glover, 13 years old, left in a frigid creek by her mother and died of drowning and exposure in 2009
  • Terrell Stepney, 19 years old, poisoned by his grandmother in a murder-suicide in 2009
  • Jeremy Fraser, 9 years old, died of recurrent leukemia after his mother withheld the medication that would have saved his life in March 2009
  • Shylea Myza Thomas, 9 years old, starved to death by her aunt, who then hid her body in order to continue to collect money she received for Shylea’s care in April 2009
  • Pamela Camille Hall, 59 years old, stabbed by her son-in-law in April 2009
  • Lloyd Yarbrough, 62 years old, fed an overdose of prescription medication through his feeding tube by his wife in May 2009
  • Jeremy Bostick, 11 years old, gassed by his father in 2009
  • Peter Eitzen, 16, stabbed by his mother in July 2009
  • Tony Khor, 15 years old, strangled by his mother in October 2009
  • Betty Anne Gagnon, 48 years old, tortured to death by her sister and brother-in-law in November 2009
  • Walter Knox Hildebrand Jr, 20 years old, died of a seizure induced by his brother’s physical abuse in November 2009
  • Laura Cummings, 23 years old, raped and tortured to death by her mother and brother in January 2010
  • Jude Mirra, 8 years old, forced by his mother to overdose on prescription medications in February 2010
  • Ajit Singh, 12 years old, forced by his mother to drink bleach in February 2010
  • Gerren Isgrigg, 6 years old, died of exposure after his grandmother abandoned him in a remote area in April 2010
  • Leosha Barnett, 17 years old, starved to death by her mother and sister in May 2010
  • Glen Freaney, 11 years old, strangled by his mother in May 2010
  • Payton Ettinger, 4 years old, starved by his mother in May 2010
  • Christopher Melton, 18, gassed by his mother in a murder-suicide in June 2010
  • Rylan Rochester, 6 months old, suffocated by his mother in June 2010 because she believed him to be autistic
  • Kenneth Holmes, 12 years old, shot by his mother in a murder-suicide in July 2010
  • Zain Akhter, 5 years old, and Faryaal Akhter, 2 years old, strangled by their mother after she first tried to get them to drink bathroom cleaner in July 2010
  • Emily Belle Molin, 85 years old, hit and run over with a car by her son in August 2010
  • Rohit Singh, 7 years old, beaten to death by his father in September 2010
  • Zahra Baker, 10 years old, murdered and dismembered by her stepmother and perhaps her father in October 2010
  • Chase Ogden, 13 years old, shot by his mother in a murder-suicide in October 2010
  • Karandeep Arora, 18 years old, suffocated by his parents in October 2010
  • Donald Parojinog, 83 years old, starved by his daughter in January 2011
  • Chad Jackson, 25 years old, starved and neglected by his mother in July 2011
  • Julie Cirella, 8 years old, poisoned by her mother in July 2011
  • Joseph Conant, 11 years old, and Nacuma Conant, 33 years old, shot by their father/brother in July 2011
  • Noe Medina Jr, 7 months old, thrown 4 stories by his mother in August 2011
  • Benjamin Barnhard, 13 year old, shot by his mother in a murder-suicide in August 2011
  • Jori Lirette, 7 years old, decapitated by his father in August 2011
  • George Hodgins, 22 years old, shot by his mother in a murder-suicide in March 2012
  • Daniel Corby, 4 years old, drowned by his mother in March 2012
  • Malea Blakely-Berry, 16 years old, starved by her mother in June 2012
  • Matthew Graville, 27 years old, tortured and beaten to death by his half-brother in July 2012
  • Melissa Stoddard, 11 years old, suffocated in restraints that her father and step-mother routinely used in December 2012
  • Robert Gensiak, 32 years old, starved by his mother and sisters in March 2013
  • Alex Spourdalakis, 14 years old, poisoned and stabbed by his mother and godmother in June 2013
  • Matthew Hafer, 28 years old, poisoned by his mother in July 2013
  • Marian Roberts, 57 years old, shot by her father in a murder-suicide in August 2013
  • Jaelen Edge, 13 years old, poisoned by his mother along with his sister Faith in September 2013
  • Tamiyah Audain, 12 years old, starved, abused and neglected by her cousin in September 2013
  • Dameian “Luke” Gulley, 14 years old, strangled by his stepfather in November 2013
  • Randle Barrow, 8 years old, drowned by his mother in a murder-suicide in December 2013
  • Mickey Liposchok, 52 years old, shot by his father in a murder-suicide in December 2013
  • Damien Veraghen, 9 years old, poisoned and suffocated by his mother in a murder-suicide in January 2014
  • Vincent Phan, 24 years old, shot by his mother in a murder-suicide in January 2014

The word “institution”

In a disability context, “institution” means something like “an organization that keeps disabled folks separate from mainstream society and under the control of others”.

It used to be fairly common practice for families (under great pressure from doctors and state authorities) to send their disabled children to residential institutions and then have no further relationship with them. That’s fallen out of favor in the past couple of decades, but a lot of the underlying power dynamics remain in service providers in other settings.

For instance, group homes are often referred to as being “living in the community” rather than “institutions”, but they also often have identical power dynamics.

Similarly, some places will say that they are not institutions but are rather “intentional communities” or some sort of utopian village because they are farms and cottages rather than big harshly lit buildings. But again, they have the same power dynamics.

The power dynamics can be hard to spot if you don’t know how to look for them, because a lot of institutions will go out of their way to pretend they’re doing something fundamentally different.

When food is too hard (my reply to an objection)

Content warning: This post is my reply to someone who reblogged calling some of my low-spoons food strategies lazy and unhealthy. Some of y'all might be better off skipping this one.

watsonly:

realsocialskills:

Anonymous asked realsocialskills:

Related to the remembering food exists thing, do you have any advice for what to do when your depression is making preparing food seem so hard that you’d nearly prefer to just go hungry?

A couple of suggestions:

Order a pizza, or some other form of food that gets delivered to you

  • Hunger feeds on itself and makes everything harder
  • If you’re in a state of mind where preparing food seems too difficult to be bearable, ordering food can often break that cycle
  • So can getting takeout or going to McDonalds
  • This is not a frivolous expense
  • And it’s not necessarily more expensive than preparing your own food. McDonalds has a dollar menu.
  • When you’re starving from not eating, it is not the time to worry about health food. Making sure that you eat comes first. Eating anything (that you’re not allergic to) is healthier than regularly going hungry because you can’t bring yourself to eat.

Keep stuff around that’s easy to eat and doesn’t require any preparation or only need to be microwaved, for instance:

  • A box of cereal
  • Chocolate
  • Granola bars
  • Ice cream
  • Popsickles
  • Protein shakes
  • Rice cakes
  • Peanut butter
  • TV dinners
  • Frozen chicken nuggets
  • It can also help to keep around disposable plates and utensils so the thought of having to wash dishes doesn’t deter you from eating

Get someone else to tell you that you need to eat:

  • Sometimes it’s easier to remember that eating is important if someone else tells you
  • For instance, if you text a friend saying “remind me that I need to eat” and they do, that can sometimes make it more possible

Get someone else to talk you through the steps of making food:

  • If there’s someone you can ask how to find/make food, that can be helpful
  • Sometimes what’s really exhausting is not so much doing the steps, as it is anticipating them, or figuring out what they are
  • If someone can help you through that, it can make it much more possible

watsonly said:

okay, this is a really good post but i do think someone should mention that defaulting to eating chocolate, ice cream, and tv dinners is really unhealthy and will probably only make you feel worse in the long run. i don’t know about you guys but eating a bag of chips feelings great in the moment but then 30 minutes later i just feel worse than before

so i give you a list of super fast and easy snacks that are inexpensive, yummy, and best of all will make you feel great (◕‿◕✿)

  • cucumbers. seriously, just cucumbers. maybe some salt on top
  • rice crackers oh my god they are so cheap and mmmmmm
  • apples, peaches, pears, grapes, any fruit really :)
  • plain yogurt with some warm honey drizzled on top
  • flavoured yogurt + granola
  • SMOOTHIES MAN LIKE RLY JUST BLEND UP SOME BANANA’S, YOGURT, COCOA POWDER AND JUICE AND YOU’VE OPENED A FUCKING BOOSTER JUICE
  • toast. everyone likes toast.
  • chickpeas! yeah, those weird things you always pass in the supermarket. mix ‘em up with whatever diced veggies you have in the fridge and put a splash of olive oil on top ;)
  • NACHOS. IT IS SO DARN EASY TO MAKE NACHOS. SERIOUSLY. DO IT. (tortilla chips + salsa + cheese + oven + 3 minutes)
  • some lovely campbells soup with soda crackers ^.^
  • eggs! fry ‘em, boil ‘em, mix em with some cheese and omelette them!
  • really just eat whatever makes you feel happy and healthy yo <33

oh, also, let’s not engage in any of this paper plate crap - WASH THOSE DISHES! seriously. rinse out your plate/bowl/cutlery when you’re done eating and do it later if you like. bUT DONT MAKE BEING LAZY AND ACCESSIBLE OPTION. PUT ON SOME MUSIC IF YOU LIKE. DANCE AROUND. USE WAY TOO MUCH SOAP SO THE WHOLE KITCHEN SMELLS LIKE SUNLIGHT. PRETEND YOU’RE ON A COOKING SHOW. DO WHATEVER YOU NEED TO DO, JUST HAVE FUN WITH IT!

FOOD IS DELICIOUS AND AMAZING AND SOMEONE EVERYONE SHOULD WANT TO ENJOY, AND SITTING AROUND EATING JUNK FOOD ALL DAY IS NOT THE WAY TO GO ABOUT DOING THAT! 

realsocialskills said:

There are some major problems with your advice. My post was for people who have trouble eating because the food logistics are very difficult for them. The problem here isn’t how to do what’s nutritionally ideal. The problem is how to make sure you eat and don’t starve, even when you’re so low on spoons that the thought of eating makes you want to cry.

Enjoying food is great. But avoiding starvation is more important. So is eating regularly enough to avoid cognitive side effects of hunger.

Most things that you have suggested are not viable for people who are having this degree of trouble eating. Here are some reasons:

Low calorie snacks are not a good solution for people who are having trouble eating enough food:

  • Defaulting to low-calorie foods is a great strategy for people who compulsively overeat and consume too many calories
  • But people who have trouble eating have the opposite problem.
  • What’s a healthy food choice depends on what your needs are
  • People who find it so difficult to eat that they’d often rather go hungry need strategies for making sure they get enough calories
  • For people who have that problem, defaulting to low calorie foods can actually be dangerous
  • Ice cream contains a lot more nutritionally essential things than cucumbers and rice cakes do

In a similar way, many of your suggestions are too difficult/exhausting/complicated for people who have this problem:

  • A lot of your suggestions call for fresh perishable ingredients. In order to eat that way, people have to be either capable of keeping ingredients around, or capable of going out and getting the ingredients whenever they need to eat. That’s often not possible.
  • Using a blender to blend something takes a lot of steps. And then you have to clean the blender, or it will make your kitchen disgusting. That can be a major deterrent to eating.
  • This is also true of making omelets and other things that require cooking. You have to have the energy and executive functioning to cook safely, and then you have to wash the pans.
  • Drizzling warm honey on top of yogurt is only viable for people who can heat honey and put it on something without making an exhausting mess.
  • Putting something in the oven and keeping track of it for three minutes *and successfully cleaning it up afterwards* isn’t easy or possible for everyone.

Some of your suggestions don’t actually make nutritional sense for anyone:

  • TV dinners are expensive, but they’re not necessarily unhealthy.
  • A lot of them are way more nutritionally balanced than a plate of nachos
  • And just about any TV dinner is better for most people than eating nothing but fruit and cucumbers

Paper plates and other disposables are necessary and important for some people:

  • Disability is a real thing
  • Not everyone can handle washing dishes
  • Trying to wash dishes can seriously damage some people’s health
  • Because it can deter them from eating to the point that they become malnourished
  • And it can also make it impossible for some people to maintain a sanitary living environment
  • Calling people who have this problem lazy doesn’t make the problem go away
  • But using disposable dishes does, for some people
  • People with disabilities have the right to eat and living in sanitary conditions

Fun and a light hearted positive attitude do not actually generate spoons or solve sensory problems:

  • If people are too exhausted to move and can barely handle getting up to make a sandwich, no amount of music is going to make it possible for them to wash dishes or make nachos
  • If the texture of water and dish soap makes someone want to scream, no amount of pretending to be on a cooking show is going to stop having to wash dishes from deterring them from eating
  • If someone finds almost all food unbearably repulsive, having an attitude that food is meant to be enjoyed is not going give them the ability to eat. Having access to the things they *do* find reliably edible will.
  • Sometimes people have good reasons for needing certain things to be really, really easy. That doesn’t mean they’re bad people. It just means they need to find easy ways to do things.

If you don’t have this level of difficulty with food, and you can handle eating more complicated and difficult things regularly, that’s great. But I wrote this post for people who need food to be as easy as possible so that they are actually able to eat it.

“What he would have wanted”

Talking about what someone would have wanted only makes sense if that person is dead.

If the person you’re talking about is still alive, talk about what they do want.

And assume that they want to live. Almost everyone does.

Even if they’re brain damaged, even if they’re in pain, even if they have dementia, even if they no longer recognize people.

They’re still a person. They’re still there. And they still want things.

So don’t ask what they would have wanted. Ask what they do want.