Tuesday, February 2, 2016

A question of privilege

Since the explosion of controversy over at The Mighty, in a lot of disability related writing there has been a spotlight on parent caregivers of disabled children who write about their experiences. I have been reading various articles and posts in an attempt to better understand how parents who write are accused of speaking from a position of able bodied privilege and, as such, use ableist language.

I admit to struggling with the concept of privilege. I am not solid in my understanding be it "white privilege", or "male privilege" or "able-bodied privilege". If you take privilege as a concept all the way to--well, all the way…it seems that everyone, in some way, has privilege and as such, everyone, in some way has bias based on that privilege and language that potentially offends those not similarly privileged. I suspect that I am tripping up on the word “privilege” itself. I understand it better in terms of imbalance of power, where the people or group with more power sets the language to be used for all. I get where that is problematic.

What I do know is that it is taboo to mention severity of disability as a modifying factor in disability related discussions. In this scenario, if you are the parent of an individual with severe, combined physical and intellectual disabilities, your child has no voice, quite literally and you, by virtue of being abled bodied, belong to a privileged group. You are both, therefore, silenced by the reigning establishment of disability experts, writers and self-advocates. This is the message. It’s quite clear.

Consider this short passage from a long and unrelentingly offensive post by Amy Sequenzia:

This second category of parents like to used [sic] some tired excuses: “My child does not have a voice, so I can and must speak for them” – to which I say: everyone has a voice and your job is to help your child use theirs. Meanwhile you need to stop talking publicly about your child’s disability and do some real parenting.

“You (disabled adults) are not like my (‘low-functioning’) child” – to which I remind them that a developmental disability has its own timeline. Many of us learned skills, and language, later than typically developing people. Don’t use this excuse to justify your need for attention. Your attitude only shows that you don’t believe in your child.

I wouldn’t bother posting any of this were it not for the fact that Sequenzia is actually quoted by other disability writers and has a voice in a broader public arena. Her rant is nothing but, though it is representative of the supreme ignorance of the vocal and articulate self-advocates surrounding all things related to severe disability. You ask me to check my privilege but you don't check your own. If you are able to get to your computer, formulate an argument, lay it out and get it posted, then field comments about it, that is your position of power. My daughter and those like her cannot express themselves enough to be heard. It's not a matter of time or a matter of my faith in her. She is brain damaged, intellectually impaired to the degree that it is not possible for her to express much of anything. For some reason, too many disability advocates cannot accept this reality, or actively choose to ignore it. Perhaps it challenges their privilege too much. Are they unable to accept that, among the group that can call themselves disabled are those whose bodies and brains are broken beyond the ability to do something or to self-express? Is it possible that you hate being on the metaphorical short bus, not because you are being marginalized, as you like to say, but because you might be identified with my supremely physically and mentally challenged child? Or is it the thought (the irony?) of some people with disabilities having to be completely dependent upon a non-disabled other to survive that pisses you off? Offended yet? Now you know how notions like Sequenzia's feel to us parents of kids or adults with severe disabilities.

From where, then, will the voice of the severely disabled come? There is only one answer: from the parents. What we cannot abide is the co-opting of disability language by disability writers and thinkers who refuse to acknowledge the existence of individuals severely, multiply disabled and their unique relationship with their dedicated caregivers. I don't believe nor will I accept that persons with disabilities have a monopoly on the experience of disability; they cannot dismiss my experience of it, through my daughter's life, as being invalid. It’s the flipside of ableism!

It’s time to end a one way conversation that insists it’s only the parents of kids with disabilities that have something to learn. If you are a genuine activist in the disability field, it’s a two way street. Parents will not be patronized in this way, or stand to be categorized as ableist. We have a lot to say and a lot of deep understanding that can broaden everyone’s perspectives on the nature and experience of living with disability. This must be the other side of the discussion that stemmed from The Mighty. 

Sunday, January 24, 2016

Interesting product!

You know that I don't generally do any sort of marketing or promotions on this blog. But someone emailed about their product a couple of weeks ago and it looks like it could help a lot of people in our community. Check it out and you can make your own decision.

EasyHold (that's the Facebook)

http://eazyhold.com/  (website)

Monday, January 18, 2016

Home made sensorial boards

My stepdaughter has limited control over her arm and leg movements. She moves them a lot, certainly, but not with much accuracy. It is a challenge, then, to come up with things for her to do, unassisted. We did notice that she loved to "scritch" her wheelchair hip belt with her fingers, especially the index finger on her right hand (it's really muscly because of that). She also loved her big keyboard (54 keys and lots of buttons for drum sounds, etc.). What she did with it, though, was interesting: she loved the musical sounds but she especially enjoyed the percussive sound of the keys when she banged on them really hard. So, quite often, it didn't matter if the keyboard was on or off, as long as she got that "clack" sound happening. With this information in mind, I built a few sensorial boards out of thick cardboard cut from, you got it...Amazon boxes...and lots of duct tape and glue. They weren't pretty, but they worked for a while. There was lots of trial and error as to the textures and materials used. One even had all different kinds of bubble wrap stuck to it, which she liked to pop. Then, one of the amazing support workers mentioned that prepared art canvas boards were cheap, quite a bit stronger than cardboard, and came in a variety of sizes and shapes. After that, she pretty much took over the entire production of very cool, and very inexpensive boards for my step daughter to use throughout the day for stimulation and just plain fun. They sit on her tray, on a rubbery sheet, the stuff you can buy rolls of to put on shelves or in drawers. Alternatively, I'm certain they could be secured with velcro.

The end results are very specific to her tastes, with almost every activity satisfying her preference for percussive sounds and/or a rough surface to "scritch".  She certainly enjoys using them, but there have been some physical benefits as well. She puts her hands in her mouth with less frequency now that she has something on her tray to do. She is using both hands in a more balanced way, she reaches forward with more accuracy and with greater intention. She is using all her fingers to scratch these things and there is less stress on the one index finger that she was previously using all the time. Being able to give her a wide variety of activities to do throughout the day gives her a lot of pleasure. She really loves her toys and has very clear preferences.

This one just below is her hands down favourite (after the keyboard). It "clacks" when she hits the keys. It's a really old toy bought at a thrift store. It doesn't light up or anything. It just clacks nicely!

Old toy with multiplication tables

This baking pan makes her happy too. It's both ribbed and percussive. It has a more metallic sound. It's taped to a canvas board. She giggled for a long time when she first started using this one. 
Yeah...it's an upside down baking pan

Upside down plastic tray!
 The straws are her favourite section of this board. 
Silicone pot holders, plastic bath mat (soft, rubbery "hair") and extra large colored straws glued down.

Two pieces of carpet samples, LEGO board

Textured plastic placemat, dust mop and fabric placemat
 This one below she just got today! She can stick her fingers in the folders and make the whole thing move, and the sides make a nice sound when she runs her fingers along the sides.
Plastic filing foder.

Some of the boards that were made, she completely shredded, but there was some value to that too. I imagine that it feels good sometimes to have control over something to be able to break it apart, to feel it tear or collapse under your fingers as a result of your own efforts. As long as everything is safe and doesn't end up in her mouth, there's no harm done.

Saturday, January 9, 2016

TMI session

About a month ago, I attended what was supposed to be an information session about self-directed funding here in the state. Right now, the state will give families or individuals with disabilities direct access to monies for various types of supports for an adult with a disability or disabilities. I know (because I have a bit of insider's info) that the state very much wants families to self-direct their funds, and stay out of state run "day habs" as they call them: state babysitting of adults with disabilities for 6 hours a day, five days a week. 1-4 ratio, wild diversity in quality and safety of programs.

That's another topic altogether, but I'm all for it right now, because I won't put my kid in a day hab facility. So I booked of 2 precious hours of my life to go the Developmental Services building and get my info.

I am a practical woman, folks. All I wanted to hear from these people was: how much money do I get, how do I access it, when can I start getting it and what I am I allowed to use it for. Well, there was a power point presentation. There were about 5 slides that whet our appetites for more information and then...the live presentations from advocates. (Dying to use quotation marks here...refraining from doing so...)

Like I said, the State is very much wanting us to choose self-directed funding over day hab (you KNOW that's because it's cheaper and will use parent driven resources rather than State driven resources). So, it was the idea of the presenters to have a self-advocate speak on how she used the funds and then a parent on how her son used the funds to make life fun and interesting. 

I respect that a young woman with a developmental disability stood up before a group of parents and told us about how happy she was to direct her funds in ways that she found fulfilling. I respect that the DS people were providing a voice to the population that they serve, but I needed hard core facts and none were yet forthcoming. In any case, the self-advocate presenter did not take too much time...maybe 15 minutes and she was clearly very happy with the whole set up, so good. NEXT.

A parent came up and began running the group there through a series of slides about what her son was doing with the funds he had been allotted. He was clearly having a great time, had lots of friends, went out a lot, had a small job, got good support. Again, a walking, talking, speak-for-myself person was front and centre...for over 45 minutes. On and on and on she went. She even said that it was her son who was supposed to do the presentation, but that he didn't want to take the time out of his super fun life to do so. It was 10 minutes to what was supposed to be the end of the presentation. All of us were parents of adults with disabilities of some sort, all of us wanted information. One parent finally interrupted the speaker to ask a question; she had her severely autistic son with her. He had been quiet all along, but was getting antsy. "I have to leave now", she said, "but...." and she made her query. An answer came from an administrator. Another parent asked a question...and the floodgates opened of parents asking questions, almost none of them directed at the presenter, now just standing there. 

At this point, I was rather hot under the collar. I had booked a support worker for my daughter until half-past the hour that the session was supposed to end and no practical information had been provided. It was, in the end, a giant advert for the self-directed program. The only information we got about the actual funding of the program was that it was tailored to each individual, that it was a new program, that they were all "feeling their way" through it.

There was more, but you get the picture. You may think that the complete waste of time it was might be what was upsetting me, but in actual fact it wasn't that. I will get the information I need from an individual meeting with a case worker at some  point, one way or the other.  No. It was that the entirety of the presentation was geared toward functioning, able-disabled individuals. No one mentioned was in a wheelchair, or with combined severe physical and intellectual disabilities. No one talked about their quality of life, or of how they would be integrated into community activities. At one point, even, a parent said of her son, "Well, my son doesn't want to be around any body else with special needs. How can I motivate him to go out?" A couple of nods and "mine too"...

Sigh. Don't get me wrong, I get the dilemma that the woman faces with her son. He's probably just on the edge of ability...too able for "special needs", too disabled for "typical". I bet she had a lot of grief over that. But damn, it was the icing on the shit cake. My invisible daughter, part of the invisible and--omg--least desirable group of disabled people, even among disabled people!

So, no...not my best day. I walked out of the session still in progress and just died a little bit more inside for my kid.

Friday, January 8, 2016

A final whine from an ableist parent caregiver.

I'll abandon the topic after this post, I promise.

I had written another post full of analysis, quotes, references in an attempt to be as fair as possible about this whole divide between parent caregivers of disabled kids and disability activists and self-advocates. I had gone to a number of different sites written by people with a disability who are respected in their fields. They made their points, some more eloquently than others (can't help but link you to A Little Moxie for a good read, even though I'm not in full agreement). There are issues specific to The Mighty---how the site is run, how it makes money--that I found revealing and that made me understand some of why activists are fed up with the site itself.

But, without question, the hostility that the disability writers project toward parent caregivers as a whole is palpable and I won't link you to them. Commentators on their posts are even worse. I swear all those people have no parents themselves, but sprung from the brow of Zeus, and stand in full judgment of us all. Either that or they experienced such bad parenting that they are now taking it out on us. Each and every post, even the most reasoned, had some mud to fling, some little patronizing line or a full out attack on parents who write about their disabled kids or about their experiences caring for them. They paint with a broad and black ink-soaked brush to invalidate everything we are trying to say. There isn't one iota of nuance in their references to parent caregivers. We are all the same: whiners, self-pitying, ableist and blind to any and all issues surrounding disability. One scholar went so far as to claim that disability rights exist purely because of the work of people with disabilities themselves. Apparently, parents have always stood silently, ignorantly, on the sidelines. (Just a little history lesson...Community Living, the largest non-profit advocacy agency for people with intellectual disabilities in Canada, was started by PARENTS, way back in 1953, who refused to put their children with disabilities in institutions. They were also responsible for getting those institutions closed.)

I go from anger to despondency on the whole topic. I realize, too, that the voices of parents who aren't full-fledged scholars and disability activists, will always be dismissed as jibber jabber from the great unwashed. In the end, it's a tempest going on "out there" somewhere and I will carry on being the sorry ass parent that I am with my disabled kids.

But I will have a few last words. You have put out a list of "guidelines" for writing about disability. Okay, then, you must add some nuance to your discussions about parent caregivers of children and adults with disabilities. Think about what it's like to be a young parent of a child born with disabilities in a NICU. Think about what it's like to watch your kid seize for the millionth time whilst you pump useless poison into her body time and time again. Think about what it's like to watch your kid punch himself out in a meltdown. Think about when he comes at you with those same fists. Think about the fact that when we walk in public we are subject to the same stares and pitying/horrified looks people with disabilities themselves encounter. Think about what it might be like to be up all night, time and time again, because your child's "atypical" neurology won't allow them to sleep. Think about who is going to speak for my non-verbal, intellectually disabled child if I don't? Just stop and think for one goddam minute before you vilify us. And get a skin when it comes to our dark sense of humour. Sometimes there's not much else holding us together. And why is it that you can bitch all over the internet about all the injustices you face and that when I bitch that I find my life as a caregiver to be difficult I have to shut up so as not to offend you? It's not about you! 

Finally, not all issues about disability come down to a social construct.  The fact that many parents of kids with severe disabilities have to come to terms with their kid's transition into adulthood, for instance, all the while changing their diapers and performing the most intimate of aspects of personal care day in and day out, has nothing to do with constructs. Yet parents grapple with it and in doing so, often write about it for support and enlightenment from others. The fact that parents struggle to find balance in their lives, when the care their offspring requires does not allow for "days off" or slacking of any sort, has nothing to do with constructs. They are realities of this life. 

At it's most basic, for those of us whose children will be fully dependent for the entirety of their lives, there is the weight that we carry knowing that how good or how bad our kid's life is is almost entirely dependent on how we care for them. If I make a mistake with the meds, it's my kid that pays for it. If I hire a bad support worker, it's my kid that suffers from it. If I'm too tired to do anything, if I don't have the resources, financial or otherwise to get my child out into the community, if I fuck up or slack, my kid pays for it. And you are woefully out of touch with who we are if you don't think that pains us deeply. There is no construct here. This is our life and we would appreciate you acknowledge its realities and stand with us, or at the very least, spare us your judgmental vitriol.

Tuesday, January 5, 2016

Yes: I write about my disabled kid to be popular

I will admit to being confused. There is quite a kerfuffle going on these internets (thanks Elizabeth for the expression) about disability inspiration porn, about parents writing about their disabled kids, and about those in the disabled community that are mad as hell and aren't going to take it anymore. Words like "ableism" and "able bodied privilege" are whizzing overhead, bandied about to the point where they have no meaning (if they had any to begin with).

It all started at a site called "The Mighty". In all honesty, I had no idea the site existed. It has been coming under fire in recent months. Many parents of children with disabilities contribute to the site, parents who aren't themselves disabled. The criticism by the disability community is that the stories either paint an overwhelmingly negative view of disability or that the stories are inspiration porn. The final straw was a story written by the parent of an autistic child (she herself, autistic apparently, and with permission from her child to publicize the post) called "Introducing: Meltdown bingo", where she attempted to make light of the various types/locations of meltdowns experienced by her autistic son. (Note: I found it on Pinterest and the comment from the "pinner" was "not really a game, just a humorous look at reality with sensory kids".)

The piece drew tremendous criticism, especially from autism "self-advocates"; the comments were quite vitriolic and the site's editor withdrew the piece. "Too little, too late", and "clickbait" (which is, apparently, a real doozy of an insult) was the cry against The Mighty. A number of bloggers have hit the 'net to criticize post writing parents of children with disabilities for writing "incorrectly" or "without respect for" their children.  Amy Sequenza in  Privacy of Disabled Children versus Popularity of Parents of Disabled Children   unequivocally states:

So, I say it again.
Your child’s disability is not about you.
Your child’s disability is not your story to tell.
If you want to help other families with tips on how to help their children, do it in private.
If you do it in public at your child’s expense, you are not doing your job, which is parenting.
You are doing it for popularity.

Now there's "The inspiration porn resolution", intended to be a "guide" to the correct sort of writing about disability. One quote taken from blogger CrippledScholar that caught my eye, 

The problem with The Mighty is that the “real people” whose “real stories” are being told are predominantly not disabled. They are the stories of parents or care givers. They are stories about disability, far to {sic} often told from outside of it. As a result far too many of the stories fall into the trap of inspiration porn or even worse parental self-pity.

No question, there is abundant finger pointing at parents with disabled kids who are writing about their experiences. Reading the comments in all of this is quite enlightening. 

Well, after going over all of this, I have gone from being confused to being pissed.

I have always been aware of the divide between those with disabilities who can speak for themselves and those of us who care for our children with disabilities and it has always been very clear that the former view us critically. Nothing challenges me more than being marginalized even further in society by what is presupposed to be "our community". In fact, Sequenza's disparaging and offending opinion was posted--on global setting, mind you--prominently on the Facebook page of an influential disability advocate who should know better. Well, it's my turn to stand on a soapbox folks and I am not about to mince words: you are just another bunch of people who don't get it, your own disabilities notwithstanding. You insist that our not being disabled somehow bars us from a "proper" understanding of it, and so we should just shut up, or bow to your policing of our words. Is the pot calling the kettle black?

Disability self-advocates who so despise having others speak for them, are very good at speaking out of turn about the life of a caregiver. Without question, there are some parent writers who might lack a certain sensitivity or who fall into the TMI category (whereas all writers with disabilities are eloquent and beyond reproach, certainly). But overall, parents of individuals with disabilities face the same challenges that disabled folks face. We stare helplessly into the same stores, homes and offices you do, when they are inaccessible to a wheelchair, or when they're a sensory nightmare. You fight to get jobs, we fight to get our kids into the local school, and don't even ask about what happens once they are adults. Feeling socially isolated? Yeah, get that. Try finding (and affording) a properly trained caregiver to watch over your kid for a few hours, let alone for a few days. Your very existence attracts stares and unwelcome comments? Well, scientists are spending millions in research to make sure kids like ours don't even make it out of the womb. Failing that, there's always legal, post birth euthanasia. Can't find a marriage partner 'cause no one can handle your disability? Hey, we parents of kids with disabilities are doing it mostly in single mode. Maybe you could marry our exes. 

The assumptions are rampant: we are whiners, we are egomaniacs, we hate disability, we wrongly speak for our kids, we are bad at parenting. Well, many of our kids can't speak and do indeed suffer because of their disabilities. A good deal of our lives are spent in an agonizing guessing game, dammit, about what to do, how to do it, when to do it, if it should be done at all and who the hell is going to get it all done and paid for. We struggle with pressure to make our kids better and better, to fix or not to fix, and at the same time deal with our own jobs, our own frailties and insecurities, and even our other kids and their issues. We perpetually walk a tightrope between the incredible joys that our disabled kids bring us and the incredible exhaustion we face in addressing their every need, 24 hours a day, 365 days a year, in roller coaster mode. 

Yes, our humour is often edgy and dark. And sometimes we are not so politically correct or we glow over shit that you think is "every day". But we love our kids and we carry on and it's a testament to our strength and our commitment to positively influence a world hostile to the existence of our children that we manage to find the time and the energy to write.  We parents of kids with disabilities understand each other. We "get it". We need each other. Our community is mostly online and we need to find each other and speak openly and freely about our experiences whatever they may be. In that way we serve each other and our children. 

If you don't like it, don't read it. It's that simple. Better yet though, don't pile on top of we who are already at the bottom of the heap with your blinkered criticism. Take a moment to consider our lives and our perspectives and stop doing what you accuse us of doing: speaking for our children with disabilities, you know, the ones WE live with 24/7 that you don't even know.

Wednesday, December 30, 2015

Thankfully, one's immigration status does not have any effect on school access. My daughter, now 21, was admitted to high school within two weeks of our arrival, IEP and all. In this state, school supports last through the 21st year until the 22nd birthday. This was quite a boon for Sophie, but for me too. Since we can't get home support for some years to come, these 6 hours (usually less...US school hours are bizarre) a day that she is away is good for both of us. She gets picked up in front of the house in a bus, and she rides with her one on one support worker to and from school and to any class outings. It's like a limousine service for that kid! She also gets OT, PT a few times a week, and even goes to an adaptive phys ed. class. The classroom has a bed in it for her to lay down in to rest. She has to get out of her chair frequently. I think maybe I need a bed in my classroom too...hmmm...

Sophie is in what is called the Bridge program. The goal of the program is to prepare adults between the ages of 18 and 22 for the "real" world. Along with the usual academic materials, the classroom has a washer and dryer, a stove, a microwave and lots of other practical things. One day a week, the students all go shopping at the local grocery to pick up and purchase food for lunch that they themselves prepare. They also work twice a week at the local university. This is unpaid work, but they get to eat together free of charge in the very fancy cafeteria at the end of their work shift. There is time at the teen centre in town (she lifts a one pound weight as the handsome guys around do weightlifting) and my daughter went to an adaptive community art program. She has ridden on the public train system as well.

My gal is the most disabled of the bunch, on the physical level. All her classmates can walk and talk, but have varying degrees of ability in terms of managing life skills. A few of them have "real" jobs, at Walmart, Walgreens and one at a hot dog specialty restaurant. They are always allowed to work during school hours if their shifts overlap with school. Others will require life long supports to survive. They are a great bunch of individuals and their teacher and support workers are really great. Just before the Xmas holidays, they were all expected to ride public transport to a local restaurant and individually order and pay for their food. So cool! They had so much fun.

Sophie goes to work too, with the rest of them. She can use her right hand, so she has been taught how to use the office paper shredder, turn it on, feed in the paper and turn it off when the canister is full. She also works in the dining hall...uniform shirt and cap...sorting silverware from a big tray. She separates the forks, knives and spoons into individual holders. Her favourite bit is eating with her friends though, and her support worker walks her along the long selection of foods and lets her pick whatever she wants. The meal always ends in a piece of chocolate cake that another student brings to her. The gal eats like a horse! At the school, she also runs the copy machine and delivers the papers. It's amazing and she works hard, I'm told. 

So...imagine all of that going on. She is soooo stimulated at school, it almost scares me as to what will happen once she has to leave it all come late May 2016. We shall see... In any case, here are some great photos of real life in a real school for my big lady gal!




On the Swan Boat (yes, in her wheelchair!)