As we celebrate today, International Day of Persons with Disabilities t
here are some things (not an exhaustive list by any means) that I would like some folks to keep in mind.
Dear Hon. Minister Browne,
By the time you read this letter you would have spent over three hundred days in office. As I write this letter I would have lived (still living) with a child on the autism spectrum for over twelve years. I am a mom and I am an advocate – And with this experience in mind I wanted to share some advice with you on an issue that you’ve been disturbingly silent on.
Let me say right off the bat that what I’m calling for is common-sense, clarity and planning with some urgency, with regards to the restructuring of special education in Antigua & Barbuda – Actually the restructuring of the educational system period. Where the child, as student, is at the center of reform, rather than a variety of external factors or where adults and their roles are central. Intentional restructuring I’m speaking of – One that recognizes that the student is the producer of educational results.
Is there any disappointment on your end that your Ministry has been unable to clearly articulate its plan for special education? Are you ok with the fact that more and more of our special needs children are either aging-out or dropping out of school? They’re unemployed; or if they’re paid, very few have a fulltime/fulfilling job/opportunities. This is not a rousing support of success and it surely does not support the status quo. Quite the contrary, it says we need to change what we’re doing. Frankly speaking, another three hundred days is too long of a wait to hear about what that change will involve.
So, in dealing with the future… I recommend humility. Just give up on making any spectacular claims. I’m way past being impressed. Those short term attempts at improving the provision of special education have been woefully inadequate; short-sighted at best, at worst…? But alas, there are still those pretentious bureaucrats in your department who get a real thrill out of assuming that their job is to spin policy (whether these policies work or not), entertain the public with interviews using lofty words, somehow securing added status. I’m sure something about this must feel good. It has to, since I’ve seen this tactic deployed so often. What you need to do is to develop policies that work. Policies developed through a collaborative process.
So we don’t have any money… I get it – Loud and clear. It’s pretty much a universal position for public schools; the fact that they’re underfunded – But I refuse to continue to accept that as an acceptable excuse. I often wonder why no one ever talks more about using the funding we have smarter. How about making the Special Education course which is offered to teachers in training, mandatory? For some reason there are those who think that special education is this stand-alone concept. It isn’t. Any “inclusion” policy is doomed without the support of the general teacher. And by the way this should not be voluntary either. These teachers should be required to do what is appropriate. Parents should not have to beg and plead with teachers and principals to take our children in the class. You cannot begin this process without the adequate preparation of the general teacher. They must know how to teach a diverse class. All our children deserve a fully-prepared teacher for every day of their educational careers. Yet we have made little progress with our efforts to provide training to the general teacher for work with special needs children. So what we have now is outright refusal by many to participate in the process. And though we’re often told by principals, teachers and education officials that they want parental involvement and that much of your ultimate success rests on our willingness to support your efforts, it is not always clear that those attempts to involve us (parents) are genuine. So, we’re the best, once we’re responding to your needs – Show up to your meetings – BUT – offer any real suggestions regarding educational plans. Hold up! Wait a minute… A lot of folks must be thanking God often for the fall-back excuse of blaming a child’s success on the lack of parental support.
I’m sure I don’t have to remind you that this is a human right, the right to a free, appropriate public education, which our children are being denied. What is happening amounts to discrimination – structural discrimination, which is the worst kind. Inequalities in education and society do not appear out of thin air. They show up when we don’t provide the foundational competencies needed to improve later learning. And whether you think this or not – by your inaction you continue to participate in denying them that right.
While I’m on this topic of funding can you tell us once and for all, what amount of funding is provided for students with disabilities in mainstream schools? What is such funding for? How such funding is allocated? So you don’t have enough… Ok, I get it. Tell us how you utilize what you have.
The least restrictive environment – Isn’t that our principle? This means children are removed from the general classroom only when their needs cannot be met in this environment. How many of your schools, if examined, can say that they’ve stayed true to this principle. Many of the placement decisions we make have very little to do with the educational need of the children. We know it, we put up with it, because in many ways it makes our lives easier. And before the teacher’s union activate their emergency plan… Let me just say that the Ministry of Education should be investing in more training – Consistent in-service teacher development programs. We need to bring teacher support closer – into the classrooms, where teachers work and where these interventions have real meaning and application. The odd workshop or information session is no longer adequate. And cramming a boatload of workshops into two weeks of summer won’t cut it either. It is simply not enough time to prepare anyone, no matter how intelligent or dedicated they are. As a matter of fact it just further exacerbates the problem – with the teachers themselves now representing one more inequality in our education system, further denying our children equitable educational opportunities.
Let’s talk about scholarships. Tell young people that there is no more noble profession than teaching, and that having qualified teachers in special education is a priority BUT we’re not just going to say it is, we are going to take steps to reform special education in the public school system. Practically speaking, you will be their boss and if you know a core part of your business is failing miserably and you do nothing about it, then why would anyone want to work in that department. Others will get excited about it IF YOU ARE, they will be committed to it IF YOU ARE; accept responsibility for it IF YOU DO. But Minister Browne… You must be able to articulate your plan. Say what the big picture is. And please, please, don’t say it’s building a school, or adding classrooms to Adele School. That just cannot be THE plan.
Speaking of which, access to tertiary education is not under threat. Don’t get me wrong… I’m not for one minute saying that it’s not important. All I’m saying is that right now, it is (access that is) not under threat. However, what I think is being threatened though, is early childhood and primary education, which you don’t hear much about. Who are we expecting to go to this University of Antigua & Barbuda I keep hearing about? Oh yes… Forgot I was talking about special education here and that the expectation is that those students will not make it to university. What a shame we make those determinations when our children walk into the classroom at three and five years old. I have to tell you Minister… This rush to build a university is giving off some serious legacy vibes. I’m not saying that it’s all about your legacy. I’m just saying that it looks like it. But you see, there’s something about legacy… And that is not to think about it. Try not to think too much about about how folks will remember you in the future. Just say what you’re going to do – Actually do it – Do it now, when it will make a difference in people’s lives. Trust me, the legacy will follow.
This haphazard enrollment of special needs students in some select (perhaps – who knows – I haven’t come across anyone who has any rationale on how these schools were selected) schools look like a publicity stunt. However, for the sake of this “one-sided” discussion let’s just say there was a plan. Can someone please tell us then, why these children were sent into already overcrowded schools? How these schools were selected? Why no accommodations were made for these students who were enrolled in these schools – not by chance but by purposeful planning? Is this a pilot program? Are we collecting any data to show what’s working, what’s not – How these students are progressing? Again, I’m not saying it was a publicity stunt. I’m just saying that it sure looked like one – And such actions would not only be morally suspect; it would also be strategically short-sighted.
In dealing with the education stakeholders, my advice… Spend more time listening than talking. I know… It will be difficult, you’re in a lofty position now; but you need to respect the fact that those who work in schools know more than you or your bureaucrats about the everyday struggles of learners and teachers. Don’t become so preoccupied with hearing your own voice you think you sound better than MJ (come on now) because you will spend your time trying to impress the Prime Minister (so that he reappoints you) and the people (so that they tolerate you) with gimmicks — those flashy, short-term, dramatic changes that anyone serious about educational reform will tell you are simply unsustainable. Haven’t realized that if we don’t do this part well then we’re on the road to failing our children?
So, the more you listen, the better you will perform.
Finally, Minister, as you lead what I think is one of the most precious assets of our country, our education system; I wanted to share one final piece of advice with you. I’m sure you’ll have some harsh thoughts about what I’ve written but let me suggest patience. You’re in a public position and will be criticized… Deal with it! Democracy is not more important to politicians than it is to the ordinary man who has to live with the effects of the policies or lack thereof set by them.
So I will tell you now – Don’t waste your time trying to find out anything about me, don’t announce any broad-based parent meeting unless you and your team are prepared to have serious dialog about the future of special education. Seriously, we’re all going to float away if we hear anymore “fluff”. Also, don’t go all “Chris Christie” on me because I’m being critical – because I see that as doing precisely the opposite of what you should be encouraging in the education system these days and that is critical thinking and community involvement – And wouldn’t that be a shame.
I stand quietly while you do somersaults on the bed as you aren’t being naughty; you are just trying to get your out of sync body under control.
I stand quietly by the toilet door every time you need to go, and come with you around the house, and sometimes even just across the room, because I know you can feel truly frightened when you are not near me.
I stand quietly at the supermarket checkout while everyone stares at you barking like a dog and blowing raspberries on my arms to cope with the buzzing lights.
I stand quietly while you tell the baffled shop owner that you are looking for shoes that feel hard like splintered wood because your skin can’t bear soft things.
I stand quietly when the attendant gives us scornful looks when I ask for the key to the disabled toilet because the hand dryer noise is too overwhelming for you.
I stand quietly while the nice old lady who lives over the street tells me you wouldn’t be like this if you had siblings.
I stand quietly watching the part-cooked dinner flush down the toilet as the smell was becoming too strong for you to bear.
I stand quietly as you diligently brush your teeth even though it feels like the toothpaste is burning you.
I sit quietly while you scream at me, trying to control the panic you feel because I gently touched your head when brushing your hair.
I sit quietly while the teacher tells me she knows about autism and that you are not autistic and asks if I would benefit from some parenting classes.
I sit quietly while the GP, the occupational therapist and the paediatrician agree how bad it is but say that there are no resources to support us further.
I sit quietly while you cry because your friends say you can’t play with them anymore because you tried to change the rules once too often, even though it was only so you could cope.
I sit quietly watching you desperately try on countless items of clothing, searching your cupboards, feeling the textures, knowing that we will have to cancel your beloved horse riding lesson again because they all feel too bad to wear.
I sit quietly as you explain to me that you can go to no more birthday parties and no more clubs as people are just too scary when they are excited.
I sit quietly when my family tells me that you will grow out of it, you just need more routine and earlier bed times.
I sit quietly and rack my brains for something for you to eat as everything you try today makes you gag and wretch until your eyes stream with tears.
I sit quietly when an old friend suggests I would be better off putting you on the naughty step and taking away a beloved toy.
I sit quietly all night whilst you sleep on the cold wooden floor with your head on my leg as you are really poorly but the warm softness of the bed that should be a comfort is making you feel worse.
I sit quietly while you try to regain some kind of control over your body in a meltdown, scared and sobbing and writhing about, hitting yourself harder and harder and begging me to hit you as hard as I can too.
I lay quietly with my back to you as my smell makes you feel sick and although we both desperately want and need to cuddle, you can’t bear to.
I lay quietly beside you when you tell me that you are the wrong sort of special and the wrong sort of different and you want to die.
It is one month until World Autism Awareness Week, so last night, rather than sit quietly googling for answers as I normally do, I wrote this open letter to share on social media. I wonder how many times people could ‘Like’ and ‘Share’ and ‘Tweet’ this over the next month? #istandquietly
I have had to learn to do these things quietly because my daughter needs me to. She is seven; bright, super funny, articulate, thoughtful and loving. She also has autism spectrum disorder. If you saw her on a good day, you’d maybe think she was a little shy and kooky. You’d maybe wonder why I am letting her wear flip-flops in the winter rain. You’ll never see her on a bad day as she can’t leave the house.*
She has severe sensory processing difficulties. A normal day exhausts her and when she feels overwhelmed, even a gentle voice trying to soothe her with loving words can be too much to process, making her feel crazy. She describes walking into a room of people as “like staring at the sun”. She’s incredibly empathetic but you may not realise as she feels her own and others’ emotions so deeply she can’t bear it, and so sometimes she has to just shut down. Forget about a hug. She is also desperately trying to come to terms with having a hidden disability that few people can understand.
This is just one story among thousands of different stories of autism, not everyone is like Rainman or like my daughter. I know it’s no great piece of prose but it’s from the heart. Thanks for reading: and I would appreciate it if you could please share to help autism awareness.
If you could donate something – however small – to help people with autism, well, that would be amazing – thank you:
*3 months of non-stop bad days and counting, not left the house since December 3rd 2014.
This guest post was written by Jill Finch. Jill is a blogger (I think she just came out – Not out out but out – as a blogger as mean. Her writings will make you laugh and cry at the same time. I kinda dig this chick and I hope you will too… Check out her blog Dirty, Naked and Happy. You can also follow her on Twitter and Facebook. Word of caution, don’t call her stupid old fatty.
Two days before our 19-year-old autistic son Mickey leaves for sleep away camp, he asks to get a haircut.
No big deal, right? But 15 years ago this would have been unthinkable.
Back then, the barbershop was the scene of some of our worst parenting moments. By 8:00 in the morning of the Dreaded Haircut Day, my husband Marc would already be muttering, “I need a scotch before I can do this” and he doesn’t even drink scotch. Bracing himself in the barber chair, Marc would clench Mickey in a bear hug and scissor-lock him with his legs. Mickey would flail frantically, headbutting his father and screaming like someone undergoing surgery without anesthesia. Customers gawked. One old man snarled, “Rotten spoiled brat.” Marc sweated through his shirt. When the barber declared he was done, I’d take Mickey into my arms. Sobbing and spent, he’d collapse against my shoulder; smearing us both with snot and hair. We tipped big. Very big.
Unable to face a repeat performance, we’d let long months go between haircuts. Mickey’s great-uncle Jack liked to tease him. “You look like a girl, buddy!” he’d say. Some days when we’d walk by that barbershop on our way elsewhere, I could swear that as soon as the barbers saw us passing, they’d quickly pull down the white shade in the window that said “Closed for Lunch.”
But today when we enter the barbershop Mickey sings out a cheery “Hi Dom!” as he plops into the chair. Dom drapes him in a maroon cape, and picks up a shaver. A screen splits in my head: I can still picture that terrified little boy, even as I watch my son, nearly a man, sitting solemnly watching his reflection in the mirror.
I wait quietly, soaking in the sounds of barbershop banter, the sports talk, the sharing of summer plans. It is all so completely ordinary. A radio is tuned to a Lite FM station; the song playing is Journey’s “Don’t Stop Believin’.” I reflect how anyone who’d seen my son all those years ago would never have believed that Mickey would one day request — insist — we take him for a haircut. Yet here we are.
“How’s this?” Dom asks. I stand beside Mickey and glance down; the cape is feathered in a field of light brown hairs, as covered as a forest floor.
“Let’s take it down a bit more,” I suggest. “Is that ok with you, Mick?”
“Yeah, Mom,” he says.
I remember how we used to sneak into his bedroom at night with a pair of shears to give him a trim as he slept. I think of the time he was 5 and we took him to a local performance by the Paperbag Players; we hadn’t known that they were going to perform a new skit called the “The Horrible, Horrendous, Hideous Haircut.” “NO!” Mickey shrieked, and every head in the audience swiveled our way.
Nowadays, Autism Speaks’ Family Services division offers a haircutting training guide for families and stylists on how to make the experience more positive, but back then there was nothing. Fortunately, one of our behavioral therapists offered to tackle the challenge. Mickey was 7 years old. She took him to the next town over — too many negative associations with our local barber — where they simply practiced strolling by a barber shop. The following week, they stood in the doorway. They progressed to sitting in the waiting area, watching other people get haircuts, then having Mickey sit in the barber chair. Eventually they introduced the cape; the shaver; the scissors. It took months, but by the time Kathy was done, Mickey was able to — miracle of miracles! — tolerate a haircut.
“This feels better,” Mickey tells me. His hair is crew cut short; I can see his scalp. I think he’s more handsome with a bit more hair. But Mickey is happy with how he looks, and that’s all that matters.
“Thanks Dom,” Mickey says softly. Dom dusts a brush with talcum powder, sweeps it across the back of Mickey’s neck. Mickey stands, turns to me and asks, “Can I have a dollar?”
I give him a $20 bill. He hands it to Dom. “Keep the change,” he says breezily. A man of the world.
“Is Dom proud of me?” Mickey asks.
“Very proud,” I say. “You know what? We’re all very proud of you.”
This whole visit to the barbershop has lasted 15 minutes. But it took us years to get here.
This is a guest post by Liane Kupferberg Carter. Liane’s articles and essays have appeared in many publications, including the New York Times, the Chicago Tribune, Newsday, Parents, McCall’s, Cosmopolitan, Glamour, Skirt!, and many literary journals. She has recently completed a family memoir. Connect with Liane on Facebook and Twitter, or her website.
This is a guest post written by: Jonathan Andrews
A survey released to 5 live Breakfast has found that more than three-quarters of disabled students and graduates are afraid to let potential employers know about their disability. It is a classic dilemma for people with disabilities – and it’s one I’ve been facing myself.
I’m in my third year of an English degree at King’s College London – in fact, it’s less than two months until my dissertation is submitted and my undergraduate days come to an end. I’ve decided on my next step – a career in commercial law – and have already secured two summer vacation schemes at top firms in the hope of obtaining a training contract.
Unlike most applicants, I’m disabled. I have an autistic spectrum disorder, as well as symptoms of dyspraxia.
When I first committed myself to commercial law about a year and a half ago, I was very concerned about being open on application forms, and throughout the interview/assessment process.
My friends and family almost unanimously advised me against being open – or to “disclose”, as they put it – because of a fear that this information would be used to sift me out at the first stage of the application process.
The way they saw it was that no company would want the hassle of employing me – they’d be scared about the effects of autism on my work, and wouldn’t want to “waste” money on adjustments when they could instead hire someone who didn’t need them.
Everyone with autism is affected in different ways – I have difficulty gauging social interactions, such as how long to speak for and how long I should maintain eye contact. Contrary to the stereotype of avoiding looking at someone’s eyes, I often find my eyes can linger too long and make people uncomfortable.
I find it hard working out if somebody wants to interject or has grown bored of my talking but, unlike people with more severe autism, I can read tone of voice very well. I’m not so good at controlling my own tone and can sometimes come across as angry or blunt when I don’t mean to be.
My family and friends made some good points. I do mention my disability when applying for big corporates, but am still hesitant about disclosing to small and medium-sized businesses as they usually don’t have teams dedicated to disability research and understanding like larger firms, or might not be able to afford adjustments.
After attending a number of disability employment events, I was able to meet city graduate recruiters at large firms – including the legal, banking and energy sectors – and learn first-hand about their approach to disability and the appropriate adjustments.
So when applying for commercial law jobs, I’m now a lot more confident about disclosing that I’m on the autistic spectrum because I’m assured the information won’t be used to discriminate against me. Instead, I’m told this information will be used positively to allow me to perform to my full potential if I get the role.
Often I will only ask that my interviewers and assessors be made aware of my autism, and how it might affect my performance in an interview, allowing them to look past certain traits, avoid misinterpreting how I come across, and focus instead on the content of my answers.
If recruiters know, they then have an explanation for behaviour they’d otherwise find odd. Revealing that you are aware of this too will paint you as a confident, mature person with attention to detail and it will also show you have an interest in self-improvement.
That being said, this doesn’t mean I have no concerns at all about being open in my future career. The recent Great with Disability report that reveals that more than three-quarters of disabled graduates are afraid to let potential employers know about their disability doesn’t surprise me.
While I’m convinced that being open makes applying for graduate and entry-level roles easier, I am concerned about the low numbers of openly disabled people in higher levels of the professions; in particular, the apparent lack of any openly autistic partners or counsels in the legal sector.
It might be that nobody with autism has ever reached these positions. It’s more likely that they have, but chose to remain quiet about their impairment or may not have been diagnosed.
Either way, without open role models, I sometimes worry whether I will be able to reach those top jobs, and wonder what it is that is holding some disabled people back.
Though large law firms might have a great attitude, top jobs in the legal sector are largely client-facing, and I can’t help but worry that client concerns about disability play a large part here – so a law firm’s internal positive disability policy may not help.
I’d like employers to understand the benefits of disability – it can make people a lot more determined to achieve goals and the challenges it throws up often force us to become good problem-solvers. A different way of looking at the world is vital. Recent evidence shows how diversity – of experience, background and belief – benefits business. But if people aren’t open about their needs, then they can’t perform at their best.
I choose to tell potential employers about my disability so that, should I require any adjustments, they’ll be available – and I can walk into work and spend all my energy on doing my job rather than hiding who I am.
Someone on Facebook recently shared this story with me. It’s about a group of kids playing a prank on a kid with autism who thinks he’s about to do the ice bucket challenge. Instead of ice-water they allegedly poured bodily fluids (urine etc.) over him.
I’m sharing the link to the news story and will leave it up to you to decide whether or not you want to watch the actual video. Between us, I haven’t been able to press play.
Unfortunately, as parents of special needs kids, these are things that we worry about all the time. What if this happens to our kids? Would they tell us? What about our kids who are not able to speak/communicate? How would we react if we knew?
What these kids did to that boy was, without a doubt, cruel and absolutely wrong. But this is learned behavior. They were not born with thoughts of doing these things. Now, this is not about laying blame at the feet of parents, however, as adults we all need to keep in mind the influence we have on the kids in our lives. How you talk about the disabled in your home determines how your kids interact with the disabled? You may mot be telling them to go out and do mean and cruel things, but if you speak of the disabled in less-than terms, they will be treated as less-than by your children. Teachers, what you say in your classroom impacts the relationship these kids have with each other? Playground and classroom hierarchies etc. manifest this way. I’m more empathetic towards kids (even though I struggle with it sometimes) who commit some of the horrific acts you hear about being done to our special needs kids/adults. But we all need to recognize that what we do and say has consequences – consequences which are sometimes borne out in ways we never saw coming.
At the end of the day I hope that whatever disciplinary action is taken involves these kids getting involved in/doing something meaningful for kids (and their families) with autism. So they get a feel of what it’s like to be in someone else’s shoes… Something called empathy.
After all we’re not born loving fries more than broccoli.
I don’t know about you but I think Chris Gayle’s recent comments in response to a question from a reporter at a press conference were totally sexist and disrespectful – And the reporter laughing is at best irrelevant and at worst heartbreaking.
In case you missed it here’s a clip of the comments (within the article)
For those who think she wasn’t offended… So what if she wasn’t? If my boss refers to a female colleague as a bitch and she’s ok with it – HELL NO it doesn’t make it right and he better think twice before he refers to me as one. I for one see that laughter though, as nervousness/I don’t know how to respond/Should I respond?/What are people going to think?/It’s Chris Gayle! I can’t challenge him. Can I?/I’m going to be labeled a feminazi. Or it will be said that I have an agenda/It’s Chris Gayle! The cricket star! So shocked and unconsciously mute now – What comes out instead? Nervous laughter… It’s a coping mechanism. Raise your hand if you’ve never witnessed it or more likely experienced it yourself.
So, yes, Chris needs to apologize – And if enough of us get together, we can make it easy for him to do so or very difficult for him not to. We have unlimited access to sports (and other) journalists online and they are always looking for stories. Well… We need to give them one. At the end of the day, the goal as I see it, is not so much to get Chris to apologize. Yes, we want that to happen and for him to recognize that what he said is unacceptable but I see it more as us preventing others from making similar utterances and understanding that what he said was totally inappropriate. You must think twice before you say stupid shit. We know… Speech is free – But – Consequences will cost you.
I haven’t seen anything about Chris Gayle’s comments on my FB timeline so I will be putting this comment on my timeline. I will also be posting this (what I’ve written here) on my blog. Is there a Twitter hashtag? I know; there are some out there who think hashtag activism is a waste of time and does nothing but I disagree with that notion. At its core it’s an awareness tool which is a big part of activism. So it’s not going to solve the problem on its own but it can make the unknown mainstream and put pressure on people to act.
Don’t even get me started on the CPL statement with their… “Chris’ comments were mere pre-match hijinks and made with no malice intended…” Seriously! Pre-match hijinks! We’re talking about a grown man here, right? And malice…! I really wonder how many people heard that and thought he meant any malice. We thought he meant something more sinister… Just creepy! He was disrespectful, plain and simple. I’m not sure about any of you but I’m deeply troubled that they continue to support him – And – their ill-advised statements make them just as bad.
Here’s an article referring to the CPL statement in The Daily Observer.
This event has many sponsors, who have been decidedly quiet. All of us need to start calling/emailing these establishments/people and let them know that you are horrified that they can continue to support the person who made such sexist comments. I would want to believe those comments he made are in direct conflict with their company’s culture of respect for all individuals – And if it is, they should say so and demand he apologizes and for CPL to retract their absurd “Mad Men era” statement and treat this matter with the seriousness and urgency it requires.