It takes PATIENCE and RESILIENCE

I am not really a patient person. However, I feel that mostly I am a very resilient person. I have to be resilient because having a physical disability means you have to be strong because some people will knock you back. This problem can happen when I try to get boyfriends, get a job and even have a social life. Most people without a disability take these things for granted.

Lots of people tell me that I am very resilient, however, there are times I do not think I am that resilient because I know what I want out of life and feel frustrated. There are people who will stand in my way and I have to work around this problem. Problems can be overcome with solutions. Solutions can be hard or easy to create. For example, getting a boyfriend is very hard work because you have to go on dates, and lots of dates to find ‘Mr Right’. Dating for a person with a physical disability is really difficult because I need a support worker with me on the date. Do you know how embarrassing it is having a third person on the date with us? The poor guy!

I have to be resilient in getting a job because some employers do not seem to be able to find a position that best meets my qualifications, disability and skill level. Obviously, the nature of Cerebral Palsy has created limitations for me. However, I do not define myself as having a disability, and with hard work and patience, I am hoping to secure a job that I can manage and that will be helpful to an employer. My disability is not a big problem. Really, it is not. I do not define myself as having a disability, but I feel that society does define me this way.IMG_0569

People With Disability Can Be Creators Of Positive Change For All

Living my life with the aid of a wheelchair takes lots of patience and resilience because sometimes it can break down and sometimes the buildings have no access. This issue gets really annoying because there is supposed to be access to all of the buildings in Sydney. This requirement is in the law. I have a graduate diploma in political public policy from Macquarie University.

I like using my wheelchair to get around to give me independence. I have two wheelchairs, a power one and a manual one. I had a funny experience with my chair a couple of days ago. I was sailing and I was going up the ramp to get some breakfast and suddenly my wheel came off. It’s hard to move without a wheel. Luckily I had my support worker with me to get me in the car. It was very funny.

People say to me, I have lots of resilience, however I can’t see this because some people knock me back with everything especially with getting a job. I’ll never give up trying because I need to be independent, but I can’t do this without getting a job. Who will pay the bills, food, etc? I just need someone to give me a fair go without seeing my disability first, but seeing me as a member of society with skills I can contribute. In this TEDx talk it shows how someone with a disability can be a thinker for positive change for all.

People with a disability only want to be treated like everyone else.

What is normal?

Special Cerbral Palsy Netflix

This question is a challenging one. I believe that a large percentage of the media have shown people with a disability in a negative light and even in movies substitute an actor to act as the person with a disability. For instance, many people think that Daniel Lewis did an excellent job in his acting role in The Story of Christy Brown’s life. However, he was only acting the role and what does he really know about having a disability! Wouldn’t it be better if they had cast me or someone else who has life experience of having a disability!
Fortunately, things are changing and real people with disabilities are playing the roles of people with disabilities. For example, Dylan Alcott is bringing the media’s attention to disability, but in a way that focuses on normality.
Many people with disabilities can get married, have children, get a job and have a social life. Unfortunately, there are too many instances in society where people with disability are not given the opportunity to achieve all of these things because some people won’t let them think that they are normal. If people with a disability constantly face attitudes from others that there is something wrong, then that view can have serious consequences including lack of self-esteem, depression and lack of confidence.
“If you are always trying to be normal, you will never know how amazing you can be.” -Maya Angelou

Guess what?! There is a series out on Netflix called ‘Special’ that follows the life of a gay man with cerebral palsy. Check it out and let me know what you think?

Welcome back to my blog

I know that I haven’t updated you on my life for a very long time. I’m back with new ideas and concepts that people with disabilities must be included in everyday society!

Easy access to cafes, restaurants, and bars around Sydney

Like everyone, I enjoy going out to cafes and restaurants and bars.  The opportunities to go out and to listen to the variety of music and of course sample the delicious foods are really pleasurable. However, there is a problem that places limitations on people in wheelchairs experiencing these joys. Why? Sydney has the worst record of access for people with disabilities especially wheelchair users. It’s definitely not hard to put in a ramp to get up to into a cafe, restaurant, or a bar, particularly where they are on street level.

People with disabilities, especially wheelchair’s users have the same rights as everyone else to enjoy going out to different places without worrying about access issues. On the weekend for St Patrick’s Day, I went into the city to enjoy the day in the Rocks, however, I couldn’t get into a pub and it seems most of the pubs have step’s into the venues. It is to be hoped that owners of these places can negotiate to include more access for people in wheelchairs

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What sort of mentoring do people with a communication disability need?

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When I go out and socialize, people always tend to look at me because of my wheelchair and not always know how to communicate with me because of my communication aid. It’s my support workers who empower me to be able to walk into a room with people that I don’t know and still feel confident. My support workers help me to be understood and let people know that I can communicate effectively with the assistance of an iPad.

I used to hate going out but when the right support worker showed up and took me out and was able to assist me with feeling empowered, having a voice and building up my confidence, I could actually start to enjoy it.

 

People with communication disabilities require people to sit with us and be patient in understanding us. To also be patient when I use my communication aids. My support workers empower me with the confidence to go out into the community and socialize with people I don’t know.

 

It’s about having a voice and feeling like I have the right to say no as well. Feeling like I can ask for help when I need to.

 

As a person with a communication disability, it’s important for my support workers to help build up my confidence and to be strong to know that I have the same rights, and can live my life to the fullest despite my disability. It’s crucial for people with communication disabilities to have mentors that challenge the very idea of a disability.

We need mentoring to break down these barriers and to train people on how to effectively communicate.

 

While the communication aid is an incredibly helpful tool, we also require mentoring on feeling empowered and confident enough to communicate as well. It’s a two-part job and there needs to be more research on how we can effectively support people with communication disabilities in confidently communicating with others.

 

One of my mentors was my speech therapist who provided me with the tools and skills to be able to use my communication device effectively. I believe it would be great to see a program where older children or young adults with communication needs mentor younger children on how to effectively use their communication device.  I think that the right speech therapist should provide the individual with practice of speech or sign language. It’s up to the speech therapist and occupational therapist to provide the child with the skills to meet their communication needs. This includes providing information on the different communication aids that will match the person’s needs. Its crucial for speech therapists to mentor those with communication devices on how to use them effectively, particularly in primary schools.

 

 

A mentor provides knowledge, support, and guidance so we can grow in our personal lives. I personally have been lucky to have a supportive family and my parents as mentors. My mother taught me how to be independent and rely on myself to achieve what I wanted in life. My father taught me that a disability didn’t need to hold me back: that it didn’t matter that I was disabled, I could still achieve what I wanted in life.  I believe it’s incredibly important people with communication disabilities have mentors who encourage them to lift their confidence and engage with others in society so that they can live a full life.

 

Disabilities are part of everyday society and aresomething that is more normal than many realize. It’s for this reason I believe those with communication disabilities need mentors to help them reach their fullest potential.

The New NDIS – My Opinion

The NDIS was a noble initiative by the Gillard Government in practice it hasn’t proven to be such an effective idea. The budget blow-outs are big, with the funding not always being allocated fairly. I think some individuals on the NDIS may be taking advantage of it and others in real need are not receiving funds. Some service providers are taking client funding for services that they cannot provide, and others are unable to navigate the NDIS system and receive payment at all.

 

I have heard plenty of horror stories and also plenty of great stories about being on the NDIS. One story from a woman in South Australia talks about how her husband’s wheelchair arrived with no wheels, as the wheels were not covered. On a different note, I have heard a story from a woman who received a new wheelchair and accessible housing upgrade as part of her new plan.

 

One of the problems is that many planners don’t have any idea about what it is like to have a disability and the day to day life matters that are involved. Often the initial care plan is inadequate to address all the disadvantages and obstacles that prevent a person with a disability from entering society. This means that the client has to go back to the NDIS for a review, a process that takes a very long time. In the meantime, the client just has to wait.

 

At times the NDIS assessment process is obviously unfair to people with disabilities. Until recently, many of the interviews for creating NDIS plans were conducted via the phone instead of face to face. This caused many problems for those with disabilities that affect communication, such as cerebral palsy. Some people are not able to communicate over the phone due to these communication difficulties. Thankfully, the NDIS has noted the concerns of the community about this and have agreed to end its phone interviews. Nevertheless, there are continuing problems with the speed and superficiality with which assessments are conducted.

 

Individuals who desperately need the assistance of disability support workers for daily activities are not being provided with sufficient hours of support. Those who are not provided with the necessary hours of support are unable to attend work, go shopping for food and carry out other necessary daily activities.

 

It is possible for the NDIS to be efficient with a few changes to the current model. For example, instead of private organizations conducting the planning, having the NDIS actually create the plans would be an important step forward because the private organizations’ focus is placed on saving money rather than funding where necessary. The NDIS also has a clearer idea of the planning process as opposed to the private organizations.

 

People with disabilities have the potential to be happy, healthy contributors to society when given the appropriate support. Making these changes within the NDIS could create profound shifts within accessible communities and transform this noble initiative into an effective and efficient program.

 

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