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Accommodations are actually a basic human right

Having processed my initial thoughts about accommodations in the context of learning environments after attending a workshop presented by Emma Van der Klift and Norman Kunc last week, my thinking shifted to thoughts on accommodations in other environments.

If you ever have a chance to hear Emma and Norm speak, you should take it up! Check out Emma and Norm's work online at The Broadreach Centre and Conversations that Matter (links will open in new windows).

What started me thinking about accommodations in the wider community was when Norm said (this is not a direct quote, it is my interpretation and recollection of what Norm said) 

when you build a ramp you aren't "making an accommodation", 

you are correcting a flaw in the architect's original design

This comment struck me as being so important. I have long said that I don't understand why all new buildings, facilities, parks, public spaces, etc., do not intentionally cater for people of all abilities. I'm not an engineer, but I feel like surely it is no harder to install ramps and lifts instead of stairs and escalators? And this is just a start. 

image: background is a picture of 3 steps made from unevenly assembled
rounds of bamboo tied together to make platforms,
 this picture has a light orange colour over it.
Text over the picture reads:
"The crux of the matter in the discussion
around accommodations and
accessibility is that every person-
no matter who they are, how they
experience the world, how they
communicate and how they get around-
has the right to be in public spaces, to
access them freely, and to enjoy them
in the same way others do.
Accommodations are actually
a basic human right."

But the issue is not really about how easy it is to make physical spaces accessible to all. The crux of the matter in the discussion around accommodations and accessibility is that every person- no matter who they are, how they experience the world, how they communicate and how they get around- has the right to be in public spaces, to access them freely, and to enjoy them in the same way others do. Accommodations are actually a basic human right. 

Some accommodations, like the ones I mentioned in my first article on this topic, are simple, easy, low cost and no inconvenience to other people. 

Some accommodations are more complex, costly and require some effort on the part of others. These facts are not a reason to decide not to accommodate everyone and to fail to ensure all people have free access to all environments. Using cost, complexity and inconvenience as excuses to exclude disabled people is discriminatory and perpetuates seclusion and stigma. It sends the message that disabled peoples lives are not as important as others, and that society does not see the value in having disabled people present as equal members of our community. 

The fact that we talk about "accommodations" is an indication that there is a power imbalance that allows the non-disabled to make decisions that have such a great impact on the lives of the disabled. The dictionary definition of accommodation/s (not housing related) is:

• a convenient arrangement; a settlement or compromise
• the process of adapting or adjusting to someone or something

This is an imbalance that causes exclusion and harm, even though it is touted as something good we do for disabled people. The fact is that use of the word "accommodations" speaks of an ugly side of our society in which people think compromise and slight adjustments should be enough- a society that believes disabled people should be grateful for the little that is done for them, even when it fails to provide what is truly needed. 

image: appears as a piece of orange paper that has been taped to the white page below it
text reads: "The fact is that use of the word "accommodations" speaks of an ugly side of our
society in which people think compromise and slight adjustments should be enough-
a society that believes disabled people should be grateful for the little that is done for
them, even when it fails to provide what is truly needed."

It is past time that we started including access for all as part of the design in every public space we create. It is past time we include disabled people in planning conversations, as leaders of the discussion, not just at the end as an afterthought, if we get called out on what we are doing, or to make it look like we care about their right to equal access. 

Equal access is a basic human right, and now is the time to take real and meaningful steps to ensuring everyone  has their needs met, instead of paying the idea lip service but failing to move past doing only what is easy, cheap and convenient for the non-disabled. It is time we acknowledge the flaws in the way we have set up spaces and places as we have persisted with convenience and ease. It is time we recognised the mistakes of our past and begin to correct them. 

Accommodations are actually really easy

This last week I had the privilege of attending a workshop presented by Emma Van der Klift and Norman Kunc. Check out Emma and Norm's work online at The Broadreach Centre and Conversations that Matter (links will open in new windows).  Emma and Norm are amazing advocates for disability rights and inclusion. If you ever get a chance to hear them speak or attend a workshop with them, do it!! It was refreshing to listen to their thoroughly pro-neurodiversity approach, and encouraging to hear them tell their stories. The particular workshop I attended was called "Hell bent on helping", and it was a thought provoking look at the dangers of benevolence contrasted with the benefits of collaboration with the disabled person being supported. But, although what I want to tell you about occurred within the context of this workshop, the workshop itself is not what I am going to write about in this post. 

The workshop stared at 9.30 in the morning. By 10.00 I  knew I was going to have trouble staying engaged for the whole morning session, let alone all day. The room we were in was a sensory nightmare! There was no natural light. The lights were a combination of a set of dim hanging lights that were kind of a weird yellow light and a set of bright lights set into the ceiling that shone a bright white light directly down into your eyes no matter where you were in the room. The room was stuffy, even though air conditioned, and the fans for the air conditioning made a very distracting loud buzzing/whooshing noise that I just could not shut out of my conscious mind. I was seriously having trouble focussing and really needed to be able to move around to release the anxiety I was feeling as a result. I was worried about distracting Emma and Norm as they were presenting, so I just tried to distract myself by tapping my fingers on each other for the rest of the first session. 

As soon as the session was over I ducked out to of the room to find a spot with some natural light and a bit of quiet. I found light, but the air conditioning out in the hall and foyer made a different low pitch humming that kind of got into my chest and made me feel restless. I was starting to wonder how I was going to get through the day!

I knew that Emma was likely finding the room as difficult as I was, and would understand my discomfort. With this helping me feel more confident, I decided to do something I'd never done before. I asked Norm and Emma if they would find it distracting if I stood down the back of the room and moved about during the next session as I was finding the environment difficult. Norm figured out how to dim the lights a bit, Emma offered me a space to sit in the one corner of the room that was less bright and they assured me they did not mind at all if I moved about.

The lights dimmed helped a little as I sat down, but after about 10 minutes I was ready to zone out again, so I got up and walked around the back of the room for a while. Once I felt less stressed I moved to a spot where I was between lights so I didn't have any light shining in my eyes and stood while shifting my weight from one foot to the other. Doing this allowed me to focus my attention back on what was being said and I didn't miss any of that session. 

In fact, having the freedom to move around the room when I needed to in order to regulate the sensory discomfort I was experiencing allowed me to stay engaged for the whole workshop, something I've not done before in a sensory challenging environment. One simple accommodation changed the whole day for me. 

The benefits of having the freedom to move when I needed to extended beyond my participation at the workshop. Because I was able to regulate my sensory system during the day, I also managed the 1 1/2 hour trip home on the train calmly, even though the trip involved a change of train halfway and the train was crowded (I don't love the train at the best of times). Then I was able to attend my evening karate class when I got home. This is a big deal for me. I am a person who usually needs a decent amount of down time after a day out engaging with people I don't know (I don't love meeting new people- it's not that I don't like the people, just that meeting them is hard), in an unfamiliar place (I don't love going new places) and navigating public transport. I hadn't expected to feel up to attending karate class that night. I also hadn't expected that the following day I'd get much done, as I usually would need a quiet day to reset after a day out in unfamiliar surroundings, but I had a productive day which included making 3 phone calls (I don't love phone calls). All these things I managed better than I expected to because of a simple accommodation. 

I've been thinking a lot lately about learning environments and the lack of flexibility and accommodations provided for neurodivergent learners. These are the main reasons my Autistic daughter is currently homeschooled- the school environment is such a significant stressor for her that she uses up all her coping for the day during the school hours and has nothing left to live life the rest of the week. Sensory and environmental accommodations are an issue I touched on in the "Inclusion" section of my submission to the current Senate Inquiry, and are a significant barrier to learning for many neurodivergent students. 

You might be reading and thinking, "what's the big deal? so you walked around a bit and you felt better...", but it's not that simple. I've spent my whole life very aware of the expectation that I blend in and not inconvenience anyone else. It is what is expected of all of us. There are rules in all social settings. In learning environments the rule is that the learners sit quietly and learn. So, for my whole life I have done that as best I can. I can manage the sit still part, but after a certain amount of time, especially if the room is a sensory challenge, the learning part is more difficult. Once I have disciplined myself to sit still that is what my mind does- it works on sitting still. In an environment with minimal sensory challenge, a bit of doodling on my page is sufficient to keep me focussed on learning. In the past I've managed to find work arounds like borrowing notes from others. In Uni subjects where tutorial classes were optional I never missed one, because without the discussion time in them I would not have been able to recall the information from the lectures in the dimly lit  echoey,  and noisy lecture halls. 

My point is, I have always, without realising it, just coped with the difficulties of navigating sensory challenges without really realising I had them. I made my own work arounds and got on with it, but I did so at great cost to myself. I would lose time that could otherwise have been productive by giving myself long periods of down time for sensory regulation, when I now realise I could have been doing that as I went along. It was easy to do and didn't inconvenience anyone else. 

Imagine how many young students could be helped by similar simple accommodations in their learning environments.  A bit of moving about, a bit of fidgeting, some natural lighting, fresh air: none of these things are complicated. Why do we insist on small closed spaces and still quiet learners? Think about how many students are currently struggling for want of accommodations that are actually really easy!

image: an orange background with light cream/grey border. Text reads "A bit of moving about, a bit of fidgeting, some natural lighting, fresh air: none of these things are complicated. Why do we insist on small closed spaces and still quiet learners? Think about how many students are currently struggling for want of accommodations that are actually really easy!"

in support of Adam Goodes: a message to his bullies

I'm doing it again! I'm wiring about AFL. Only this time it's mostly about manners and respect and advocacy.

For the background to this post, you should read yesterdays post >> click here<< it will open in a new window. 

This post will be shorter. I just have one thing to say, and it is to all those people who have been actively justifying their poor behaviour for the past 48 hours. 

To all of you who say "Booing Goodes isn't racist, I'm booing because.... 
{insert as many of the tired old reasons that are circulating here as you wish}
I'd like to know:

If your kid came home from school and said they were being picked on and had asked for the kids doing it to stop because their feeling were being hurt but the other kids wouldn't stop, would that be OK? 

If you went to work and people there abused you every time they walked past your desk citing a reason that you believed to be invalid, and refused to stop when you asked them to, would that be OK? 

How about if you made a mistake, and people yelled at you every time you took on a new task to remind you that they noticed your mistake a long time ago, and you asked them to stop but they decided continue yelling and to tell you you should stop whining and just suck it up, would that be OK? 

I'm guessing no. I'm guessing if it was you turning up to work and being booed, yelled at, called names, and generally abused you'd be pretty upset by that. You might even call the people involved bullies. And you'd be right. 

I'm guessing that if you decided to take a couple of days off to catch a break from the bullying and abuse, and people called you a sook, you'd feel like that was unfair. You might even consider quitting that job to get away from the stress. And many people would understand you doing that because turning up to work week after week and trying to carry on and ignore bullying takes its toll eventually, no matter who you are. 

So, to all of you vigorously defending your right to be an asshole from the safety of your anonymous seat in the stand and from behind your computer keyboard, I say this:

I don't care what you say your motivation is. I don't even care what your motivation actually is. It is impossible to convince bigots they are bigots, so I won't even try. 

But how about this? Your behaviour is hurting someone. He has said it is hurting him. He has asked for it to stop. If you choose to keep on with your behaviour, knowing it hurts, then you have bad manners, and show a lack of respect for other human beings. You are a bully. 

I see bullies a lot as I raise my Autistic children. These bullies seem to enjoy picking on people who stand out as a little bit different. The pleasure seems to increase if the person responds in an act of self advocacy. You are those people. You are just the same as the kids in the playground who call names and exclude from games while laughing and patting each other on the back. It is ugly in children and even uglier in adults. 

I regularly stand up for my children. I have to stand up for them to other kids who behave the same way you do. Sometimes I have to stand up for them to adults who behave the way you do. I have to stand up for them to systems that are based on the values you uphold with your callous and stubborn refusal to admit you might have been wrong. And I will stand up for Adam too. 

Stop being bullies. Sit down and watch the game with respect for those there to provide your afternoons entertainment. Cheer the good stuff. Save your boos for the true injustices in the world. 

AFL, Adam Goodes and acceptance of diversity in Australia

I'm going to do something I've never done before. Chances are I will never do this again. I am going to write about football. Australian Rules Football to be exact. This is unlikely to be a "popular" post, or even of interest to most of my regular readers, but I wanted to record my thoughts somewhere public.

As a matter of disclosure, I will say that I have been a fan of the Sydney Swans for a number of years. For the past few years my family has held a membership and we go to every home game they play. We like the sport, we like the team and we like Adam Goodes. As a matter of principal I will say that even if the issue I am going to write about today wasn't involving a member of my favourite team, I would still be angry about it.

Some background, in case anyone unfamiliar with what is happening is reading.
For some time now Adam Goodes, a key player in the Swans team, is noticeably booed by fans of opposition teams when he has possession of the ball during a game.

Booing is a part of the fan "culture" in AFL games, and is used as a way of protesting a bad play made, a poor umpire decision, or any behaviour the crowd deems unacceptable (an example would be if a tackle results in a player being knocked unconscious).

The discussion around the booing of Adam Goodes by the people who do it largely centres around their belief that Goodes is a "flog"- a colloquial term used to mean that someone is a lousy person for one reason or another. Some say it because they think he is rough or overly aggressive on the field. Some say it because they think he is a whiner. Some say it is because he is a bully; specifically that he bullied a teenaged girl. The situation came to a head a couple of months ago when, during the "Indigenous Round", Adam- an Indigenous man- celebrated scoring a goal with an Indigenous war cry dance some young Indigenous players had taught him. And, as a couple of major news outlets have stated, the country imploded over an imaginary spear. Since then, the booing has increased, and the discussion about racism in our nation has intensified.

I am not the first person to write about this, of course. In fact, I suspect this post would be fairly considered as arriving late to the party. So, I doubt I'll have anything new to add. But here I am. It bothers me that this is happening. Here is a man, who has been an amazing footy player since before my now 19 year old was 8 and loving cheering for Goodes. Back then he wasn't booed. So what changed?

Well, in the past 10 years, Adam Goodes has moved on from being "just" a footy player, and has become an advocate. He advocates for the right of Indigenous people in our country. He mentors young Indigenous people, future players in the AFL. He has entertained our sports fans for more than a decade with good strong football, but once he began to point out some of the privilege and prejudice that exists in our country, suddenly he is labelled a bad person.

That teenaged girl he "bullied"? What happened was he called her out for calling him an ape. From what I can tell from media reports the young lady phoned him later and apologised. Goodes accepted that apology by publicly acknowledging it and asking people to show the young lady support. But ever since there have been people who have attacked him for his reaction to being called an ape. Essentially, we have an Indigenous man who stood up for himself and has been vilified for it each time he turns up to work ever since.

The arguments that he is rough on the field? I can tell you now that his team mate Lance Franklin, who is also Indigenous, is more aggressive on field than Goodes is. He is not booed ever time he touches the ball. There have been many other (non Indigenous) players over the years known for their aggressive style, and to this day are considered heroes of the sport.

How about the "lousy person" argument? There are other sportspeople who are actually known criminals who receive more respectful treatment than Goodes does.

What we are really seeing here is not an objection to aggressive play of the game, or any personal failings as a bully. What we are seeing is exactly what journalist Waleed Aly identified. Adam Goodes has shown he is an Indigenous man who does know know his appropriate place in our society as part of a minority group. He challenges people on their prejudices, their racism, and they will not put up with that. He is not perfect- no one is. But Adam Goodes is being bullied, and the crowd is allowing and encouraging it. They will proudly boo him, shame him, until he retires, and they will justify it with all sorts of unjustifiable nonsense as they down their beers and celebrate 'Straya and its values of mateship.

I am pleased and cautiously hopeful to see the AFL leadership beginning to take a more noticeable stand on this following Lewis Jetta's show of solidarity over the weekend as he performed his own war cry dance. But I  don't think the booing is going to stop.

For all our self congratulatory back patting over how accepting and mate oriented and champions of the fair go we are here in Australia, we are incredibly racist and extremely intolerant of diversity. Just as Adam Goodes is howled down for advocating for Indigenous rights, so others are silenced when fighting for the rights of other minority groups. Our treatment of disabled students in schools, our attitudes to Asylum Seekers (people who are genuine refugees), our fear and hatred of Muslim people, our skepticism toward anything not considered "like us" overwhelmingly confirms that we do not like, or even tolerate, diversity. The booing of Adam Goodes is just the tip of the iceberg. The fact that it has been going on so long and is still justified by so many is something we should all be ashamed of.

one of THOSE days

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http://michellesuttonwrites.com/2015/11/29/one-of-those-days/

Neurodiversity versus "The Mighty"

This article has been moved to http://michellesuttonwrites.com/2015/12/21/neurodiversity-vs-the-mighty/

Basics of Neurodiversity infographic

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michellesuttonwrties.com

http://michellesuttonwrites.com/66-2/the-basics-of-neurodiversity/

Tired. Anxious. Almost not coping. Or almost doing well.

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http://michellesuttonwrites.com/2015/11/27/tired-anxious-almost-not-coping-or-almost-doing-well/

the basics of Neurodiversity, in my own words, with pictures

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MichelleSuttonwrites<dot>com

http://michellesuttonwrites.com/q-a/what-is-neurodiversity/

Neurodivergent NOS

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MichelleSuttonWrites<dot>com

http://michellesuttonwrites.com/q-a/what-if-my-neurodivergence-does-not-fit-a-label/

thoughts on selling my kids deficits to get them support

If there is one thing bound to make me feel foul it is a visit to the doctor for getting paper work done for Centrelink payment applications (for those not in Australia, Centrelink is the government department that administers welfare payments, most disability support payments require a doctor assessment).

In our family's case at this point in time, it is a necessary thing that we apply for financial support from Centrelink. My Wonderful Hubby works full time, but I am needed at home to support two kids educating at home and to be available around the clock as a support/carer for those in the family that that need it. We are incredibly grateful for the financial support we receive. Without it life would be so much more difficult. 

However.

I do my best on a daily basis to build my kids up and encourage them. I try to instil in them a sense of self worth and pride in who they are. I advocate strongly that they be seen as valuable just as they are, event though they need some more help than other kids their age. 

When I have to fill in the paperwork to apply for financial support so I can continue to be a stay home mum, I am faced with page after page of needing to sell my amazing children's deficits. 

I have to tick the boxes that expose all the areas in which they struggle the most, make them sound like burdens, tell the part of their story that is negative without any indication that they are a real person with real feelings and real value. 

I have to do this with my kids sitting there, because the system requires that the doctor fill in their forms for the application after seeing my kids. So they get to hear me do this story telling. 

My older kids have to contribute to the story telling. It's a kind of enforced self shaming that they are supposed to just accept as a regular part of life if they want help. 

I know it is a means to an end. I know this is what I have to do to get them the support they need. 

But it makes me feel like a rotten traitor every single time I have to do it. 

And I can't help feeling it is not necessary. We don't force non disabled people to have regular sessions in which they are expected and required to confess all their struggles and failings to a gate keeper of all assistance. 

I'm so tired of it. 

But we are about to embark on a new round of appointments and assessments for my nearly 16 year old, because now that he is about to be no longer a child (??????) apparently he magically should need less help. Except he doesn't. In fact, in his case he has needed more help the older he gets. 

So, we get to go and prove that to clerks who have the power to decide if he can have help. We get to tick boxes with number codes next to them that are supposed to give a realistic idea of what life is like for him every day. 

Never mind that the forms are geared toward people with physical, intellectual and psychiatrist disabilities- none of which Autism actually is. 

Never mind that the things that actually disable him aren't really caused by Autism at all, but rather by societies unwillingness to make small accommodations for anyone who doesn't meet the unspoken and constantly changing set of arbitrary rules defining what is acceptable. 

And so goes my rant. I could continue. I won't. I need to pull my thoughts together and get back to focussing on what actually helps us. 

But I will say this. I wish with all my being that I didn't have to sell my kids deficits to get them the help they need. 

the problem with "There's a little bit of Autism in everyone"

"There's a little bit of Autism in everyone" ?

The problem with that statement is that it completely disregards and minimises the lived experience of Autistic people.

I'll try to explain.

I think the comment comes from another problematic statement: "Autism is a spectrum" which, from what I can tell, most people seem to think means some people are only a little bit Autistic and others are a lot Autistic. Not true. Autistic people are all Autistic and may have some challenges in common and some that differ than others. (Like all people, yes? I mean, not all women live the same lives....)

I guess assuming that some people are only a little bit Autistic lets us feel we can relate to Autism in some ways. But is that our place?

Lets take sensory overload as an example. Sensory overload is not something that only Autistic people experience. I am not Autistic. I do experience sensory overload sometimes. My daughter is Bipolar, not Autistic, and she experiences sensory overload sometimes too. Which means, in some small way, we can relate to an Autistic person. I don't see that as a problem. It's OK to say to an Autistic person that you can understand a little about what it is like to experience sensory overload, if you do.

But that does not mean you know what it is like to be Autistic and it does not mean you have a little bit of Autism in you.

Here's another way to look at it. My daughter is Bipolar, and experiences depression sometimes. I experience depression sometimes. I can relate to some aspects of my daughters experience. But I do not know what it is like to be Bipolar, nor am I "a little bit Bipolar". I just know what it is like for me when I am depressed. Some of that may be similar to what she experiences, some of it is not. If I claim my experience with depression means I know what it is like for her to be Bipolar, I am dismissing her lived experience and making light of her challenges.

Same thing.

If someone says they think everyone is a bit Autistic they are dismissing the lived experience of Autistic people and making light of the very real challenges they face living in a world that by and large does not accept them as valuable and is not set up to support their needs.

Depression, discontent and the negative thought spiral

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http://michellesuttonwrites.com/2015/11/27/depression-discontent-and-the-negative-thought-spiral/

Floating on the edge of depression

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http://michellesuttonwrites.com/2015/11/27/floating-on-the-edge-of-depression/

Autism is not an illness: The problem with the way we speak about Autism

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http://michellesuttonwrites.com/2015/11/17/autism-is-not-an-illness-the-problem-with-the-way-we-speak-about-autism/