The Ultimate Parental Struggle for Mainstream Education and Schooling

It is often agreed upon that knowledge is power; as such getting a good education is very beneficial to setting one up for life, right? But if you’re a parent of a child with a disability; what would you do to help them navigate their way through the challenges of mainstream schooling? Well, for my latest blog I present two brave mums, Rima Shah and Nikki Ashton as they candidly voice their opinions on the issue of bullying. Both mothers took the opportunity to open up about the social challenges that children with disabilities may face in school environments.

While neither Rima nor Nikki had significant apprehensions about enrolling their kids into mainstream education, they both agreed that bullying was an issue of considerable anxiety. Arguably I’d suggest awareness is, and always has been the key, and where better place to start than in the classroom-the very place where one starts their educational journey. I suggest (having gone through mainstream schooling as a person with special needs) that ‘Inclusive Education’ would be a useful competency for those along the teaching spectrum.

When discussing her son Nikki Ashton noted;

“When Ben was in year 9 he was bullied by a group of 4-5 boys. The school asked me to come in and talk to them about Ben’s challenges, and educate them on CP. It was a successful strategy and they ended up being friends with Ben.”

Could we propose that the reason as to why people bully others is simply a symptom of ignorance that can be minimised or avoided with education and understanding of the individual circumstances of others….?

On the topic of inclusion and healthy interaction Rima Shah raised similar concerns about her son;

“I think it takes time for kids to accept a child with special needs. Given the right school environment this can be made easier but you will always have bullies that create trouble. Education of disability helps to minimise this. Most boys at the age of ten want to run around with their friends. Aaryan cannot do this–so he often struggles to [participate] at lunch time.”

While the subject of disability can sometimes be viewed as a taboo and a stigmatised topic of conversation, the need for education on it in our society has become a never-ending subject that is often spoken about in and of itself. but let me tell you that as I was writing this article, I was shocked and equally surprised at the fact that it is and/or can often be an issue for people to understand, perception-wise...even in the school classroom…the very place where one starts their educational journey.

‘Inclusive Education’ is an optional elective subject available for those studying Education at University which equips individuals with the knowledge and skills they need to confidently and comfortably engage students with a disability. Reflecting on the comments made by both Nikki and Rima, a case I believe, can most certainly be made that ‘Inclusive Education’ become a required competency.
 
If one argues the expense of mandatory ‘inclusive education’ training, it’s hardly comparable to the price paid for ignorance….

Fighting Chance blog 5

The value of working hard NOW Friday, 16 March 2012 01:40 “Death is very likely the single best invention of life. It is life's change agent. The benefit of death is you know not to waste life living someone else's choices. Don't let the noise of others' opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition." Steve Jobs, Apple CEO 1955-2011. “Every death in one’s family poignantly conveys a message to their loved ones to live life more fully, presently and in the now”. Oprah Winfrey, American TV show host. “Love your family; try to do as much as you can. I think that’s why I’m always trying to burn the candles at both ends now. I want to be there for my family and for my loved ones, and if somebody needs me or wants to be with me, I feel really bad or guilty if I can’t be there for them”. Kris Jenner - Kardashian family mum, American TV personality, producer and author. Hi Readers, First of all, let me give you some personal background on the three people quoted above, all of whom are “visionaries” in their own right and own way. After being diagnosed with pancreatic cancer in mid-2004 and not knowing how much time he had left to live as a result of that, the CEO of Apple Steve Jobs was somehow, I believe, “inspired” by that very fact to use his experience to share some insight with his fans and followers about how to wholeheartedly continue living your best and fullest life, in your own way, even in the very thick of adversity. The comment by American TV show host Oprah Winfrey was made when Canadian country singer Shania Twain was on Oprah’s show promoting her autobiography “From This Moment On”, after Shania expressed her sadness at losing both her parents in a car accident in 1987. The reason I quoted these three people is because I believe their words are perfectly relevant to this topic: The contrast of life and death. Parents often tell their kids that life sometimes and/or often isn’t delivered to us on a silver platter and often try to instil the “value of hard work” lesson in them; that they could have and do anything they want, as long as they work hard to obtain it and/or achieve it, which is a good lesson to impart.  I would happily welcome your feedback on this issue. But in this blog post, I’d like to pose these questions to my blog followers from two different perspectives, both from parents and individuals: Questions: 1. How do individuals find the right balance in life in relation to the difference between the “value of hard work” lesson, versus the “making the most of every growth opportunity that life may throw at them” lesson? 2. How do parents manage to find the right “balance” between, on one hand, instilling the “value of hard work” lesson in their children, while on the other hand also helping ensure that they make the best of the growth opportunities that life may offer them, even if that might include them pursuing their own leisurely dreams, likes and/or goals? 3. As an individual, how do you manage to live a “balanced” life that includes both the lessons listed above? Throughout my life, I was raised with the “value of hard work” lesson instilled in me and for most of my life that was pretty much how I operated. As I look back on what my life was like, growing up and having “the value of hard work” lesson instilled in me, I also now realise that for the past six years, both life and the universe were trying to wake me up to the fact that sometimes in life, there is never gonna be a right time to do anything that you intend on doing. If there was something I wanted to do, then I should go for it and not give up on it. Personally I can’t understand how this particular theory works but it does, and for a very good reason and that’s because as life runs its course it can sometimes take us on an unpredictable and emotional rollercoaster ride. I guess the most common mistake that people make who were raised with the “value of hard work” lesson, myself included, is that they “make” and let their whole lives revolve around it and make decisions around it; which is sometimes wrong because in hindsight, you sometimes might have allowed yourself to miss out on what potentially could have been an “interesting growth opportunity” to learn from, without even knowing it. The reason I quoted American TV personality, producer, author and Kardashian family mum Kris Jenner is because, let face it, we’ve all been there or have had to go there at one point or other countless times in life, and I think this particular quote is so relevant to this topic and will deeply resonate with readers. For me personally, I’ve always been a hard worker my whole life and I like doing things that can take me on a personal learning curve, but over time I’ve now also learnt how to enjoy the life moments and make the best of every opportunity given to me. But it took a few harsh “wake-up calls” to get me there. For me unfortunately, lightning did actually strike twice: first, it took a major personal health scare for me to finally realise that there is never going to be a “right” time to do anything that I intend on doing, particularly when it came to pursuing my dream of meeting my musician role model; and secondly, when my beautiful work family unexpectedly lost their beloved son and brother Shane O’Reilly last July, aged 21. Even though I personally never got to know Shane, his death taught me that NOW is the time to live, pursue my dreams and do whatever I like whenever I like to do it - because you never know when your last day is going to be. I write this article in honour of Shane and the three people that I quoted above.

Fighting Chance blog 4

Overcoming the hurdles of employment

Wednesday, 01 February 2012 03:36

Our In-house blog writer, Maria Makhoul, is back to look at the challenges people face in gaining employment. Employment: One's work, trade, or profession. Back in August 2011, when I introduced myself in my very first Fighting Chance blog, I briefly touched on what “employment” generally meant for and to me whereas this time, I’m delving deeper inside of what the different challenges that mainstream employment has to offer and entail for people with disabilities; what follows is a series of interviews with myself and my Fighting Chance colleagues Ray Sladic, Mark Wadsworth and Georgia Cooper about our employment experiences. Georgia Cooper 1. What is your disability and how does it affect your ability to work? Ray: “Well, I have mild cerebral palsy (CP). How does it affect me? Well, it doesn’t really affect me. But it can affect other people’s points of view.”  2. What are the difficulties of getting into mainstream employment that you can’t do anything about? Ray: “Well, you know, it’s very hard getting a job, especially for disabled people. Employers want a person that can be able to do everything, and sometimes they think you can’t do everything.” Mark: “Most jobs now days require a driver’s license and I had to give mine up last year. Getting to and from work is difficult but you can do it.” “All I require are toilet modifications and that’s about it. But then, I’ve never particularly liked working for someone else.  I’ve been self-employed since the age of 19. I’m pig-headed, I’m obstinate and I’ll tell people what I think.” 3. What kind of problems might you face in the workforce? Maria: “Whilst I can adapt to people being different, I can’t adapt to people getting angry with me for things I can’t do anything about. This is why I feel it’s really important to establish a rapport for the people I’m working for, if something personal comes up that you might find difficult to handle, you would be hesitant to talk to them about it if you don’t have a personable rapport.” “Georgia: For me, if I can’t get something myself I need some assistance. But I like to be as independent as possible, that’s the most important thing, to be independent and focused and confident as you can be.” 4. Have employers ever discriminated against you? Maria: “My last job wasn’t really challenging or stimulating. I was doing packaging and had leave due to ill health. They wanted me to increase my productivity and work too fast. My neck was hurting and it gave me frequent headaches. I would classify this as discriminatory, knowing how capable I am at doing everyday stimulating work tasks at my own pace.” “I would ask employees to follow their heads and hearts and to speak up if something is wrong and persist in speaking up if they don’t get heard, or just empower themselves to take a stand and leave if they feel that they’re not being heard.” Mark: “They wouldn’t dare.” Georgia: “No not really. Mostly employers have been pretty good.” 5. What does it mean for you to be employed? Maria: “It’s just given me a purpose of the ability to connect with others and getting to voice my opinions on many issues that matter to me outside my disability”. “I’ve been told that the work I am doing is inspiring, but I never saw myself that way I just saw myself as doing what any other person would do under the circumstances.” “It feels really comforting for me to work here (Fighting Chance) because I work with a family that is committed and driven to make a difference for people with disabilities and believe in me enough to employee me. I enjoy talking to my employers and I’ve established a great rapport with them. They know what I’m going through, if I go into work having a difficult time, they can ask what’s wrong and they help you get what you need to overcome whatever hurdles.” Mark: “Basically, it’s fulfilling, it makes you feel as though you’re contributing to society. The most important thing about working is enjoying the company of the people you work with...Except the boss.” The bottom line is, when life throws challenges at us, we all go through something that makes us become strong life survivors. Getting into mainstream employment is no exception to this rule because I wholeheartedly believe that each and every single one of us as human beings is an “unstoppable” and capable warrior, in our own right; that should be given a chance.

Fighting Chance blog 3

Stares and the Power of Kind Words:

Tuesday, 24 January 2012 23:43

While babies and toddlers can't help staring, when other people stare it can be hurtful. This is why it's important for people to be educated about disability and why staring can be harmful. As anyone who has a disability will know, growing up can be like riding a rollercoaster. Often you search far and wide for inspiration about how you can make your life more meaningful and achieve a sense of purpose and fulfillment. Furthermore, one of the most common and frequent hurdle that you face is the unkind stares of others. Despite attempts to ignore people’s stares, it is still a hard thing to endure. For me personally, I’ve narrowed the reason for these stares to be because I have to use a wheelchair for long distances. I have moderate cerebral palsy and I get tired. As I’ve previously mentioned my second work blog “The Prejudice of Words”, I sometimes feel “reluctantly” lucky that I can do the things I can. For example, I feel very lucky to have clear verbal speech. My heart also goes out to my friends who can’t speak, or whose speech is severely impaired but are just as equally smart and bright as me. I often think how daunting this must be for people who cannot speak, to be stared at by others. For me growing up, I didn’t attract as much “staring” attention when I use my walking frame. I always found this interesting, and thought it to be because the walking frame gives me a sense of normalcy, which is not there if I use my wheelchair. Personally, I strongly believe that no-one should be allowed to stare at me just because they think I’m “different” when I use my mobility equipment, but I only give exceptions to this rule to babies and toddlers because “stare helplessly” without meaning to cause any harm. So, I went on a quest to try and find something to help people deal with their staring woes, and recently I found just the thing. I was out shopping in Hornsby and walked into a shop called “ESQ Design” and saw a grey t-shirt with a cute little panda that read: “Don’t worry be happy, look at me I’m happy”. The message on this shirt is one which I think all people with disabilities should carry with them, and I believe it is one which could make a difference to people’s confidence and self-esteem. It certainly has for me. People might look at us, but let it be because we are happy with who we are.

Fighting Chance blog 2

The prejudice of words Monday, 31 October 2011 04:59 Fighting Chance's in-house blog writer, Maria Makhoul, on why language itself poses a big challenge for people with a physical disability... Growing up with Cerebral Palsy (CP) is tough. I have personally faced discrimination and prejudice throughout my life. But at just 13 I proactively decided to overcome that discrimination. I wholeheartedly decided to learn how to have the inner strength and deep personal confidence that I needed to face whatever hurdles life threw at me, despite the inevitable stares my disability brought on and what others thought of me. Now, I know surviving your teenage years is and can be an eternity but you can get through it. My own teenage years also came with their challenges. I was born with the moderate type of cerebral palsy which means that while I am able to walk using mobility equipment to support me with my physical balance issues, I use a wheelchair for long distances because I get tired. Because my CP is mild, I sometimes feel “reluctantly” lucky that I can do the things I can. But despite that, I personally try to push myself to try and attempt new recreation activities as well as pursue new personal and career goals. I even have come up with my own terminology for the idea of “disability”. The term I use is “permanent lifetime challenge” because it empowers people to believe in themselves, and realise that having a disability won’t stop a person from leading a limitless life. My preference for the terminology “permanent lifetime challenge” came from two realisations. Firstly, I feel that the word “disability” is a problematic one. 1. The word “disability” actually means “a handicap that leaves one unable to do something”. 2. From that definition itself, the word “handicap” actually means “something that holds a person back or makes things harder”. 3. The syllable “dis” means to belittle someone or to show disrespect for someone. Now, what is really interesting about the concept of being considered ‘disabled’ is that some people assume that just because you are physically “crippled” then that must mean that you are also intellectually “crippled” too. I hope very much that perception changes someday soon. In my opinion, a lot of people are nervous about befriending someone with a disability, let alone employing them, solely because of that perception. And it is so wrong. My second realization of the value of the term “permanent lifetime challenge” came from these three words themselves. 1. The word “permanent” means lasting, or meant to last for a very long time and so not temporary or changing 2. The word “lifetime” means the period of time during which an individual is alive. 3. The word “challenge” means the calling for work, effort and the use of one's talents. I personally and truly believe that words have power. The reason why I say this is because I see that some people think that their disability can stop them or limit them from doing normal, regular activities and living their life to its fullest potential, which can both extremely sad and heart-breaking for both the individual and their family. In fact, it should be the complete opposite!  Such things as ‘disability’ don’t have to control and consume you, unless you personally allow them to do so.