Tag: inclusion

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Accessible and Inclusive

Two words that really weren’t even in our (Lisa and me) vocabulary before we were blessed with our little angel Lauren. Little did we know just how well known these two words would become a part of our everyday life. And certainly not in a positive way but in a fight for your rights kind of way.

Let’s begin by defining what each of these words really mean, what they imply. “Disability inclusion means understanding the relationship between the way people function and how they participate in society, and making sure everybody has the same opportunities to participate in every aspect of life to the best of their abilities and desires.” While accessible means, “ a person with a disability is afforded the opportunity to acquire the same information, engage in the same interactions, and enjoy the same services as a person without a disability in an equally effective and equally integrated manner, with substantially equivalent ease of use”. Those two words would change the world for so many disabled persons if only they were put into practice.

Having a child with a disability opens up a whole new world of challenges that we never knew existed before. Ever since Lauren was diagnosed with spastic quadriplegic cerebral palsy, we have come face to face with the many obstacles that she will have to face; not because of her disability but the roadblocks that society and the world has placed in front of her. Roadblocks that make it near impossible for her to consider her world neither inclusive nor accessible.

They say a picture tells a thousand words. So let me paint you a picture. A little girl sits anxiously in her wheelchair at the entrance of her school playground, while the ‘normal’ kids run freely through the sea of pea stone that covers the floor of the whole playground. She sits there knowing that it would be impossible for her to maneuver her wheelchair through this sinking sea of stone. Then she thinks, even if I could get pass this gate, then what?? She realized that there’s not one piece of equipment that is accessible. Someone had forgotten about those two words, accessible and inclusive, while making plans for her school playground. After all, it’s her playground too! Isn’t it? So she turns around and leaves…

I could paint pictures on top of pictures of examples where Lauren was unfairly and unjustly misjudged because of her being in a wheelchair, enough to fill an art gallery. One assumption that I must mention; that being, she’s in a wheelchair, therefore she must be delayed mentally. The only person that is mentally delayed is someone who thinks this way. Lauren is one of the smartest little girls I have ever met; she could teach the wisest among us a thing or two.

I won’t elaborate any further, there’s just no need. I think you get my point. If we are going to have an inclusive and accessible society then we have a lot of work to do. But in order to change our world, we must put those in a wheelchair and with other disabilities in the forefront, not on the backseat. Maybe ‘walk’ a mile in their shoes. It’s then we will see change; accessible and inclusive will become a normal part of all our lives, none excluded!

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“Battered n’ Worn”

I have recently completed a painting called, ‘Battered n’ Worn’ (view on my Facebook Page: ‘Harris’ Artistic Designs’). It depicts a scene of an old, weather beaten shed and an overturned ‘punt’ that had seen better days. And the boisterous sea just uncaringly raging in the background. While I was engrossed in the actual painting of the scene itself, I really didn’t give much thought to what I would name the painting or what the painting was actually trying to say to me; not until it was competed! And then I stepped back and viewed it from a distance, it really told the story of my life and how I was actually feeling right at that moment. I had painted my life and it was ‘Battered n’ Worn’.

I have fought this crippling, disabling sea of depression and anxiety for far too long and it was starting to show. That along with ALL of the other winds and weather, had left me battered and worn. I was and is feeling much like that deserted, weather beaten shed; ready to crumble if I had to withstand just one more storm. How much can one withstand before the storms of life just leave you battered and worn; before the shed can take no more and just eventually crumbles beneath the beatings of the storms of it’s life.

If the only battle I had to fight was for my mental health, then maybe I could withstand that. But when the storms of life, and they are many, come beating you down and the winds are taking you off your feet, the rain as saturated your skin, right to the bones. The cold, cold air as left you numb, the raging sea is pulling you down into it’s clutches and you are drowning, gasping, gasping, gasping for air.

But you cannot keep a good ma down, no matter what others may think or say about you; you forgive and move on. You get up and dust yourself off, and we have had to do this many a times, and keep moving on.

One such battle that we have fought and I believe now is the time to let the world know how Lauren was discriminated against by Skate Canada, Skate NL and the CBNSC. I will give them the benefit of the doubt that it may not have been intentional but as defined by Human Rights: ‘Intention to discriminate is not a requirement to a finding of discrimination’. The full story can be found on our website: www.harrislisa72.com called, ‘I Want To Skate Like ‘Bruddy”. But the story doesn’t end there. I filed a complaint with the Human Rights Commission and won the right to file a ‘formal complint’ against Skate Canada NL. This was no easy journey, filled with anxiety, fear and intimidation. You see, Skate Canada (on behalf of Skate NL and CBNSC) hired a lawyer to fight their battles (an intimidation tactic I’m sure, hoping we would back off, not a chance). I followed through with the Human Rights procedure in settling this injustice.

This is what we were offered to keep our mouths shut and not proceed any further. Sadly to say, we could not proceed any further because we did not have the money to obtain legal counsel of our own and I could not fight anymore. But this is what we were offered and I am quoting Skate Canada’s lawyer, ‘My client is prepared to pay the sum of $2000.00 in settlement of this matter. These funds would be paid in exchange for a release which acknowledges no admission of liability on the part of my client. A condition of the proposed settlement is a confidentiality agreement. This proposal would not see the provision of an apology on the part of my client’. Obviously we did not accept the ‘bribe’ and because we really could not pay for a lawyer, we had to withdraw the complaint.

Did we lose? Not at all. First of all we did pass the requirements and was awarded an ‘Official Complaint with the Human Rights Commission’. That was the first hurdle and we leaped that one, without any problem. We knew we had a legitimate complaint. And although we had no admission of guilt on either of the three clubs involved; we ourselves knew by their actions of hiring a lawyer and offering money for a confidentiality agreement, that we had won.

I write this because it is not Lauren’s Cerebral Palsy that we are fighting against but an everyday fight for her rights as an equal, inclusive and accepted little girl that needs to live a happy life, in spite of the injustices, the stigma, the unfairness and lack of compassion that is still prevalent in our so-called ‘Society’ today. And this is just one example of what we have to deal with on a day to day basis. And yet we have to stay strong because the challenges that come with Cerebral Palsy alone is enough to ‘break’ any man or woman!

So today as battered and worn has we may feel, we will fix up that old shed and polish ourselves off and lift our heads high and be proud parents, that want nothing more then for their children to have the best life possible; against all odds. And we will not give up the fight, we are going to brush ourselves off and start again. It’s not a choice, we have to do it, if we are going to survive the raging storms in our  lives!

 

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Back To School Disaster

Have you ever felt beaten down; well I feel beaten down today. Ever since our child came into the world, we’ve been like any other parent and want nothing but the best for her. But that best is so obstructed by so many different means. And sadly to say, it’s only parents of special children that understand.

Excuse my expression, but it best sums  it  up, “You are damned if you do and you’re damned if you don’t”. I have advocated for disabled children on so many levels, it certainly doesn’t win you any popularity contest. But I’m not in this for the prestige or the social status. In reality, people look at you, as if you are committing a crime. Dare not fight for equal rights, all inclusion, accessibility, policy change or disturb the comfort zone of the ‘normal child’.

I am so amazed at our ‘all informed society”; that kids today don’t know what a wheelchair is. If parents could just take a moment and educate their children that we are all different, even if we don’t have a disability (a one we can’t see anyway). And different is not a bad thing, it’s okay to be different. For those who don’t know how to explain what a wheelchair is, I will do it for you. A wheelchair is a chair that has wheels that allows a person that has legs that don’t work because their brain is damaged and can’t tell their legs to move. Therefore they require a wheelchair to provide mobility (allows them to get from point A to point B) so they can move around independently. Having legs that don’t work is no different then someone having eyes that don’t work properly and therefore they have to wear glasses to see. Or maybe someone has ears that cannot properly hear and thus they have to wear hearing aids in their ears to hear. Because you have a disability doesn’t mean you have a intellectual disability; I’ve met people standing on two legs with very little intellect. It’s not rocket science, it’s simple; diversity is what makes us unique not defected.

Again this week, that ugly word came up again, policy, don’t get me wrong policy is great if it works; whether it’s our health care system, education system or legal system. But trying to adapt and adjust a five year old little girl with CEREBRAL PALSY into the school system that is bombarded by policy. WE can’t do this because that’s our policy, we can’t do that because that’s our policy; then to hell with policy. If it’s not working, and obviously it’s not, then it’s time for some change or a little tweaking. If this little girl is forced into an environment that she sees as frightening, scary and overwhelming and CP just intensifies these emotions. Then certainly our school system can adapt and adjust to a little change in policy to accommodate a little child, for what’s best for her; not the system. After all aren’t we living in an all inclusive society? So let’s protect our children, not the system. And for that to be done in “a nurturing, supportive, INCLUSIVE environment where all children are challenged and valued”. This week my thoughts have been challenged and disturbed to the cop out in order to save one from having to deal with conflicts to ‘policy’.

In order for this little girl to adjust properly, due to her CP, requires her to do it gradually with a parent or someone she is totally comfortable with, present to reassure her that this is a safe environment. This will only happen when she is introduced on HER terms; not the schools, not the unfamiliar team and certainly not the policy. Once she is eased into the environment, the parent can gradually exit the building and she can become the independent, intelligent and happy child that we know she was and is. If the school is not willing to make these adjustments, then this little girl will be having a very short school year. And only those who can help are the ones who right now strictly enforce policy that obviously requires leniency in practice.

For the protection of the school and child; names have been withheld.

 

 

 

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I Want To Skate Like “Bruddy”

I’m beginning to realize our battles with Lauren have only just begun. And we already feel exhausted from making sure that Lauren’s rights are met.  We are supposedly living in an all inclusive society. A place where children are not singled out has being different. But I think where all children are equal, regardless of their disabilities. And never tell a child they can’t do something because the have an impairment.

Our dilemma, this time, began when we signed Logan up for CanSkate, who’s only requirement was an helmet, pair of skates and a fee. So on Logan’s first week of skating, I took Lauren along with us to watch ‘Bruddy’ skate. So when Logan got on the ice and we turned to go to a viewing area, Lauren started to scream and cry. When I asked, “what was wrong”. She answered, “I want to skate like ‘Bruddy’. I tried to distract her but she had her mind made up, “I’m going on the ice”. So I consoled her by telling her I’d call  and we would see if we could get her signed up for skating. Lisa arrived and went to talk to someone about signing her up, even with CP.  So the lady said, “sure no problem, this was an all inclusive club and by law were required to accept anyone wanting to join. Three weeks later we finally (after Lisa emailed to check on the hangup) got an email that saddened us so much. There were requirements and recommendations that stated in the email from CBNSC; “Sorry for the delay, we contacted SkateNL for recommendations who in turn forwarded our email to SkateCanada for further  recommmendations”. Is Lauren the only disabled child in Canada who applied for CanSkate?  And Logan could join, no questions asked, but Lauren was different and neither of the three clubs were prepared to register a disabled child! We try to instill in Lauren that she can do anything she wants to do , but maybe in a modified way. ” Their suggestions (SkateCanada) were to allow her to wear her double bladed skates and to use a red glider. Now Lauren can’t use a walker let alone a glider. The only other requirement was that there be an adult program assistant with her at all times”. All other children could use a juniour PA because they were “normal kids”. The catch being; there are no adult PA’s in the CBNSC. So we were expected to find our own, “they suggested that this could be a parent”. It’s our intention to treat  Lauren like Logan and be like the other kids; using a PA. Not her parents, we want to teach her independence, to meet and trust other people and be just like all kids. “Also to be required to pay the SkateCanada Insurance fee of 32.65” (for the parent). If this was what we wanted; we could take Lauren to the Parent and Tot Program for free, rather then paying SkateCanada for the same service. “Lauren is permitted to start skating once ALL recommendations from SkateCanada are met”.

I called the CBNSC to state my concerns, then SkateNL, no response, then SkateCanada. After having a satisfactory and pleasant conversation with SkateCanada, I was told they took my issues very seriously and would be working on them the first thing Monday morning, because it was now 4:00 on Friday and the office was closing. I received a text from CBNSC, I texted back saying that it was okay, I had contacted SkateCanada; I think that “upset the cart”. She called anyway (against my wishes) in which I said, I didn’t need to speak with her, I was satisfied with SkateCanada and could have ended the conversation there. And I had to end the call by saying, ” I’m finished this conversation because it’s getting nowhere. which she didn’t hear because she was too busy ranting in the phone and I ended the call. She then called back, I didn’t answer, I was finished with this conversation. She left an unpleasant message: I then had to block her number. She kept saying that they were only looking out for her protection. And  SkateCanada had the nerve to say, “and the protection of the others”. If they were so concerned about her protection then provide her with her own Adult Assistant, I’m sure they could find someone in NL. Or if they can’t provide the proper protection for disabled children, then maybe they should  say we can’t handle disabled children in the first place. And exclude them because proper protection is not available by the club.

It’s kind of ironic because it was only recently that Lauren participated in the “Blind Hockey Canada” because she has a vision impairment. The attendants were all volunteer juniour hockey members who skated with Lauren by holding their hands under her arms and skated around the rink like a pro. She was so excited and needed no assistance from Mommy or Daddy. She was a big girl now, skating all by herself; just like ‘Bruddy’.

I feel if Blind Hockey Canada can provide this service then so should SkateCanada. We left with a sense of pride and accomplishment. But with our email from CBNSC, it just left us deflated and discouraged. Sometimes when “we are only looking out for her protection”, it reinstates that she is disabled and has a parent you can take that has an insult. Lauren’s hurts won’t come from falling down on the ice but being constantly reminded that she is different and certainly not always included in the “Norm”!.

Attachment:

The ways in which I feel Lauren is and was discriminated against is;

  1. She was not offered registration immediately, three weeks later and “they” are still working on the logistics as stated in an email of October 6, we are now in week four.
  2. The email of October 6 from CBNSC and I’m quoting; “the possibility of registering Lauren for CanSkate program”. Implying it was a possibility not a certainty.
  3. If SkateCanada already had a policy in place concerning disabled children and were confident in how to register that child, then why the logistics between CBNSC, SkateNL, SkateCanada? Were they not competent enough to handle the situation and carry out a stress free registration that should have been handled in one day, like our son who is “normal” child.
  4. SkateCanada are responsible to have PA’s available and not expect a parent or guardian to be on the ice. Again pointing out that Lauren is different because she requires her Mommy and Daddy, and not a regular PA.
  5. If we had known that we would have encountered all this discrimination and and differential treatment of one of our children over the other, then neither would have been considered to join SkateCanada.
  6. If Skate Canada was so all inclusive has they claim, why wasn’t the proper protocol already in place; at a time in which a disabled child registered. Rather then all this disconnection between CBNSC, SkateNL, SkateCanada. I believe they are not has all inclusive has what they claim  or I would NOT be writing this blog. It’s obvious that neither club knew just what to do with a child with a disability.                                                                                                                                                                                                                                                                                                                                 Note:                                                                                                                                                                October 17  Conversation I had with SkateCanada                                                                      I talked things over with my wife and we decided that neither of our children will be a part of CanSkate because of the strained relationship we feel we now have with the club. We do wish to have a full refund of our son’s fee which can be forwarded to us by mail at……..                                                                                                                                                                                                                                                      As of today; November 4th we have NOT received a reimbursement.
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Writing- Therapy?

I’m reading a book by Benjamin Cox and in his book he says, “I am writing to save my life; it’s the only thing that helps, like therapy in a way.” I can totally relate to what he’s referring to. Ben is a recovering addict; I’m a recovering mental ill person. Just like Ben, we will have to fight our “demons” for the rest of our lives.

Every day for me is still a battle/struggle. Life doesn’t come by so easily has it use to. Even the  little things, sometimes seem so overwhelming. Just like Ben, I will always be a work in progress. There will be days when I don’t feel so well but I do have things in place that help me to cope. And writing my thoughts on paper, I find really helps. Then sharing these thoughts on my blog makes me feel  like I am helping someone else who is suffering from their mental illness.

It seems like forever since I have written, but that’s because I have written but have not published in my blog. Sometimes my thoughts are too deep that they are not for public viewing. This  past week has really been a tough one. In spite of my illness, I still have so many battles to fight. All of which are triggers for my illness but fight I must; I don’t live in a bubble, life still has to move on.  One such battle is trying to obtain funding for Lauren.  We get no Government assistance; I have gone from Provincial to Federal with no hope in sight. Then accessibility and all inclusion battles have left me discouraged, drained and to a point of just giving up but I know I can’t; she’s depending on me.  Raising a child with a disability opens your eyes to an whole new different world; that only those who have experienced it can relate. A world and society that are not all that accepting has we hope to think they are.

I guess now I’m an advocate for both our disabilities; Major Depression and Anxiety Disorder and Lauren’s Cerebral Palsy. Neither of which our society has made it any easier to be accepted and included. There is a stigma attached to both and I’m sure that  Ben can certainly relate to; with him being a recovering addict.

I find writing to be an outlet. A place to free your mind of all it’s thought. A means to find an escape, even if it’s only for a few moments. Like Ben, if it’s going to save my life then I will write, write write!