Special Treatment

I have always been uncomfortable with receiving special treatment because of my disability. I have had this issue all of my life, starting from when I was a young kid and I went to community fairs. I would receive honourary awards and acknowledgement for just participating when no one else did.

I bring this up because I had an interesting situation last week. I was coming home on the TTC bus and as I was getting off the bus, I was putting my token in the box and the driver tried to tell me not to worry about it - that is, putting the token in the box. I put the token in the box anyway.

The interesting thing is that this is not the first time that I have had this situation. It has happened quite a few times.I don't know if this is because of my disability or another reason such as the driver is in a rush. And I am not trying to toot my own horn, saying that I am wondering because I pay my fare. I am just saying that it is a matter of community inclusion. I just want to be treated equally as a member of the community. To me, this is a matter of give and take. I will enjoy the benefits of being part of the community and I will fulfil my responsibilities, including paying what I owe.

Developing New Opportunities by Sarah Evans

Sometimes it's easy for me to get stuck and unmotivated.  I know that I have to try harder to go out and be with people, but I make excuses such as the following:  I get too tired,  I don't want to have to cancel my attendant care too many times, I have too much work to do.

But every once in awhile, something comes along that motives me.  Last weekend,  I was at the People in Motion show in Toronto, which is an annual trade show for people with disabilities.  I saw some really neat things.  The Ontario Wheelchair Sports Association had a booth there featuring information about a number of different adapted sports. There was also an organization called Wheel Dance, which offers dancing for people with disabilities.  I took some information from both organizations and signed up for their mailing lists.

I know that I need to be proactive in kickstarting my social life, but going to where there is a lot of information about different opportunities is very inspiring for me.  It excites me to think about trying new things and meeting new people.

The Five A’s of Raising a Child with Autism by Renée Cormier

When my eldest child was three he was diagnosed with Pervasive Developmental Disorder, which is a form of Autism. I used to love to sit and watch him play. It fascinated me to see how he lined up his toy cars and blocks to the millimetre and to see how he grouped his Legos according to colour. He always put the same colours together and placed them in the same order next to each other. He would jump up and down on his toes and twirl his fingers between realignments, but at the time, I had no clue this was anything other than a sign of pure genius. Being the youngest of five children and a new mother, I had no point of reference, so when the doctor asked me if Maurice played normally, I told her yes.



Maurice enjoys the company of his siblings.
Pictured here from left to right: Celeste, Marcel and Maurice Cormier.

 Maurice’s first words were numbers. He could count to 18 without making any mistakes when he was only 18 months old. Before he turned two he could recognize written words on sight such as stop, exit, cat, dog, etc. but he never asked for anything and he never even called me Mama until he was three years old. For years, if I asked him to hold a bag or a toy, he would just look at me. My words meant nothing to him. When he did start to talk, it was usually repeating something he heard on TV such as “each sold separately” or “Deep Space Nine”.

Maurice will soon be turning 23 and has come a very long way since then. If I had to give advice to the parents of young autistic children, I would tell them, first of all, that things can get much better and not to focus on what their child cannot do.  Secondly, I would tell them to consider that they have been given a gift and that their situation is not calamitous. Thirdly, I would tell them to raise their child using what I call the five A’s of raising a child with Autism. These are the rules I gave myself once I understood what I was dealing with and I believe much of Maurice’s success today, is because I raised him with these things in mind.

Avoid giving in to your child’s resistance to change: Autism is marked by an extreme resistance to change. As a young child, Maurice would get upset over the change in sleeve lengths between summer and winter and would cry and tantrum because he didn’t want to wear the appropriate sleeve length. I could have just kept him in the same type of shirt, to avoid upsetting him, but life is about change. All children need to learn to adapt to change, no matter how difficult it is. It took a couple of years, but eventually, Maurice had no trouble wearing seasonally appropriate clothing.

I recall an incident when Maurice’s brother and sister decided to “be each other” when I picked them up from daycare one day. To do this, Marcel and Celeste decided to wear each other’s coats and boots and sit in each other’s seats in the car. Maurice screamed his lungs out and begged me to make them change back. He couldn’t stand it. As a parent, I could have told them to not aggravate their brother and put an end to the game, but I felt it was more important for Maurice to learn to accept change, so I endured the wild screaming and crying all the way home in the car. As soon as we got in the house, Marcel and Celeste took off their jackets and boots, and Maurice stopped crying. My nerves were shot, but all was right in the world again.

Today, Maurice has become quite adept at dealing with change. We moved house several times throughout his life, he’s had to change schools, pass through many seasons, start and finish many things. No problem. If I spent my life accommodating his need for sameness, he would never be able to cope with the real world.

Acknowledge your fear, but then close your eyes and let a miracle happen: There is nothing tougher than letting a child with a disability do what every other kid does. The first bike ride alone in the street, the first trip on the bus without supervision or guidance, allowing your child to do anything independently is very scary. What if something terrible happened? It is always possible, but as a parent, you have to be careful not to suffocate your child into permanent dependence. Say a prayer and force yourself to let your child enjoy independence. If I have learned one thing in this life, I have learned that children will rise to the level of responsibility you give them. Even children with intellectual challenges need to be given the gift of independence and self-reliance and believe me it is a gift. You are being a good parent when you let your children do new things. It is okay. You are not being neglectful.

Allow your child to experience defeat: This is another tough thing for parents to do. We love our children, and wanting to protect those with extra challenges is highly natural. I never wanted to tell Maurice he couldn’t do something because of his disability. In high school, he really wanted to be on a sports team like other boys, but he wasn’t born with an abundance of natural athletic ability. I could see that, but he wanted to try out for teams. I knew he would have trouble competing with other kids, but I bit my tongue. I let him try out for teams and discover for himself what he really could and could not do. As it turned out, he found he was able to compete in sports like cross country running and track and field. Was he the best in the school? No, but he was there and he got to attend the awards dinner with all of the other athletes. He was happy, and I was happy for him.

I always made sure to let Maurice try new things, even if I thought he might not do as well as other kids. The truth is, he has often surprised me. His lack of self-consciousness works in his favour and we have a lot to learn from that. How many people avoid trying things because they are afraid of failure? Self-doubt is your enemy and doubters are poisonous. Don’t poison your child with doubt.

Accept that you will need to be an advocate for your child: When you have a child with a disability, the world will not necessarily understand what it really means. Even educators can be surprisingly ignorant of your child’s condition. As a parent, it is your job to make sure people the around him know how to manage your child. You will need to be in communication more when they are younger, but sometimes even when they are older. Swim instructors, teachers, daycare workers, deans, professors, etc. Every now and then, you will need to step in and be an advocate for your child. Don’t be passive about that.

Appreciate the differences:  Your child’s lack of self-consciousness/ self-awareness, his micro focus and his literal interpretation of the world around him are not things to worry about. They are all very important parts of who he is and they teach you many important things. When I look at my son I see proof that success happens in the absence of doubt. His in-depth knowledge of the things that interest him remind me that knowledge is power, and his literal interpretation of the world, reminds me that I need to be concise in my communication. What’s wrong with that? Love and accept all of it, for there is great beauty in all things.

Today, Maurice is a college graduate, film editor and film enthusiast. I am enormously proud of his accomplishments and proud that he has grown to be such a dependable and talented young man. His award-winning short documentary called Normal: A Story of Autism can be viewed at: https://youtu.be/9KLAWRBvLb8

Renée Cormier is a Public Relations & Communications professional in Burlington, Ontario. Contact Renée through her website:  www.reneecormier.com .

Healthy and Unhealthy Relationships by Sarah Evans

Many people struggle with setting boundaries. They don't know when and how to say no in an appropriate way. This is an often overlooked issue for people with disabilities.

Boundaries mean different things to different people. I once heard them described as being where one person ends and another begins. I have also heard boundaries being compared to fences. They enable people to say yes to some things and no to other things.

I have noticed that one common boundary issue for people with disabilities is mistakenly believing that the professionals they work with are their friends. They may think this because they spend a lot of time with these people and they lack opportunities to develop friendships with their peers. Knowing this, professionals may (intentionally or unintentionally) feel bad for their clients and be afraid of hurting their feelings if they were to set boundaries. Therefore, they may find it difficult to set appropriate boundaries with their clients or correct wrong assumptions about the nature of these relationships.

It is important for professionals to be direct and forthcoming with their clients. These types of relationships usually only last for a relatively short period of time. The best thing professionals can do is prepare their clients for the future, including future relationships (professional and otherwise). As well, setting appropriate boundaries models and teaches clients to set healthy boundaries of their own, which will ultimately help them to value themselves and their feelings in relationships.

Resources:
 Canadian Medical Association Code of Ethics

JKP Blog Interview with Frank Cooper, Author of Professional Boundaries in Social Work and Social Care

Why Good Customer Service is Important by Sarah Evans

The other I remembered the importance of good customer service.

I was shopping with my aunt for clothes. One store we went into had excellent customer service from the moment we walked in until we walked out.

When we got into the store, a customer service representative asked us what we were looking for and took us to the right section. She helped us find what we what we wanted. Another representative took us to a change room and asked us frequently if we were alright and needed anything.

Our cashier was really nice, too. She was friendly and laughing. On our way out of the store, she pushed the button to open the door for us.

Little things like these can make a big difference. It is not always easy to shop for clothes when you have a disability. You have to sometimes deal with small change rooms and trying to determine different sizes and styles of clothes. Friendly customer service representatives make it a lot easier and more pleasant.

A Missed Opportunity? by Sarah Evans

The other day I encountered an interesting situation. I was at the aquarium in Toronto with a friend. It was during the day, and so there were a lot of kids with their school groups there. At one point, I was up against a display in my electric wheelchair and a little girl was in front of me. She put her arm on the foot rest of my chair, leaning against it.

I didn’t know whether or not I should have said something. I didn’t really mind her doing it. At the time, I wondered if her teacher might say something to her. Thinking about it after, I realized that it was my responsibility, not the teacher’s, to speak up and say how I felt.

This also raises another question in my mind. Is it just about me? I am not sure. Even though I didn’t mind, maybe I could have used this opportunity to educate this girl about people with disabilities and teach her that the equipment that we use is an extension of ourselves and that our personal space needs to be respected. Not that I would make a big deal of it, but maybe politely asking her to remove her arm could have gone a long way in educating her. 

Disability and the employment challenge

By: Chris Viola

 

Let’s not sugar coat it: almost everybody has some kind of employment struggle within their lifetime. However, gaining employment when you have a disability can turn this medium sized cliff into Mount Everest. Some people with disabilities are completely unable to work, but those who can work, face enormous barriers in order to gain employment. It is especially difficult to land jobs that actually pay the bills. There are fail-safes designed around this, but many of them simply will never work as intended, especially when it comes down to disabilities. Allow me to explain.

 In Canada, we have what is called the “Employment Equity Act”, which works in tandem with the “Canadian Human Rights Act”. These two acts state that someone can’t be treated unfairly or discriminated against due to their disability. Employers also have to be mindful not to discriminate against people for their race, religion, sex or sexual orientation. It’s a blanket policy that works for most groups, but there is a double edged sword for people with disabilities.  The policies, however well meaning, backfire on people with disabilities and most people don’t even realize it.

 One of the statements in the act is that an employer must ‘provide reasonable accommodations for employees with disabilities’ and has several lines that boil down to saying that despite one’s disability, in order to get hired they still have to be able to physically do the job. For example, a visually impaired person would not be able to become a chauffeur. This seems fair for safety and practical reasons, but the ‘provide reasonable accommodations for employees with disabilities’ part often causes complications that go against the disabled job candidates who are physically able to do the job.

 For the sake of an example, let’s say the interviewer is down to two job candidates, both with likable personalities and equal qualifications, one with a disability and one without. The person without a disability requires no accommodation. However the one with the disability, might need a wheelchair ramp, or a special computer screen, for example. Many companies would rather hire the candidate who won’t cause them to have to make and pay for changes in their work space. Likewise, if the person’s disability required they work in a noise free space, then having to give the employee a separate office with a solid door, might not be so appealing. If the person with the disability doesn’t say they need accommodations in their interview and then springs it on their employer last minute, they risk causing conflict with their employer.

Even though there is legislation to provide equal opportunities for employees with disabilities, the fact remains that having a disability continues to be a barrier to employment. Statistics Canada recently published a study on employment among people with disabilities (both physical and intellectual). In the study, 33% of 25-34 year olds with a severe disability reported being refused a job because of their condition.

Some people with disabilities do find employment, but the unemployment rates are considerably higher among the disabled. Those who graduate from university, do tend to do better than those who don’t but they also tend to be excluded from higher positions. I try to remain positive about my employment prospects just the same. I expect I will experience a great feeling of accomplishment when I finally tear down those barriers and succeed in finding gainful employment.