Finding my way, with CMT

Living with Charcot Marie Tooth Syndrome (CMT), a type of neuromuscular disease, can be seen as a challenge, but try living with CMT and being from a culturally and linguistically diverse background! There are a lot of challenges and barriers, but I try to look at the positives. CMT has really helped me to become a strong and confident person.

Hi, my name is Abrahim and people sometimes like to call me Ibby. I am a person with CMT Syndrome and I’m from a Lebanese background. I was diagnosed when I was just five years old and have used a powered wheelchair since I was 15. That transition from being able to walk to requiring a wheelchair made life extremely difficult for me.

Cultural challenges

Being from a culturally and linguistically diverse community can make you feel trapped as there is a view that a person with disability must be taken care of by their mother. I usually get talked down to, which upsets me, and so I try to stay away from people. I don’t get the same level of respect as the rest of the family who are able-bodied. My sister also has CMT. It can be uncomfortable being in the community with my sister as people stare at us too much. They even come up to us and start asking questions, uncomfortable questions, but we tend to stay strong and live on with our lives.

My sister has not found the courage and confidence to be more active in her community yet. She stays home a lot. I tend to support her in every way I can. I help her to pick up things from the floor or help her with small things like charging her tablet or phone. Usually when she wants to go out with her support worker or with our mother, I come along and keep her company.

Achieving through adversity

As a teenager, I suffered mental health and depression, having these negative thoughts in my head all the time, distracted me from focusing on school. I felt socially isolated and wanted to be away from everyone. The teenage years were the worst years of my life. But despite the obstacles of having a physical disability and mental health issues, I was determined to finish my school years on a positive note, and study at university in my chosen field of Accounting. I completed my HSC in 2009, and felt excited to finish school, but I still felt anxious and depressed because now I had to face the real world.

I got accepted into the University of Technology (UTS), Sydney to study IT but UTS was far away from my home in south-west Sydney.  I was afraid of catching public transport in my wheelchair, but I couldn’t afford to catch a taxi every day to and from the campus! On top of that I did not want to be a part of this community, this society, as I was afraid of people watching me, judging me and talking about me.

Eventually I decided to go to the Western Sydney University (WSU) in Parramatta, as it was much closer to home. I studied Business and Commerce (Accounting) for 3.5 years and graduated in 2013.  The following year, after searching and searching for jobs, I decided to study for my Masters of Business and Commerce at WSU. Then I did my Diploma of Leadership and Management and a Certificate IV in Customer Engagement.

Trying to make things work

I got one degree after another, and helped a lot of people with their studies over the years. I was living a depressing life, to be honest, going to study for the purpose of trying to make new friends and because it was really hard to find a job. Going to different service providers with the hope of getting a job that I enjoyed and which related to my area of study was extremely frustrating. I was in and out of jobs. I was involved in internship programs and jobs which required me to sort out paperwork.

Since 2011 I was hoping to kick start my career in accounting. But, with all the time I wasted relying on service providers, I didn’t end up getting into accounting and did part time work as an administrator from 2013-2017. I started to do my own searches for a job online, built up my resume and started applying. I got a few job interviews, but it was always a tricky process because as a wheelchair user, I needed to make sure the venue was accessible. I was worried that no one would hire me as an administrator/ accountant due to my claw like hands – the muscles are there, but my fingers are a bit bent and unable to straighten up. It doesn’t matter, I can still use my hands and type. It’s the assumptions of people that I struggle with and that brings down my confidence.

Relationship struggles

When I graduated in 2016 with all four degrees, I struggled to make new friends. A social life, for me, was very difficult. I found it very hard to trust people. I lived most of my young adulthood isolated and lonely. I rarely made any friends. The so-called relationships I had were with girls I met online. I chatted with them over social media apps and to be honest, they were all a waste of time. There was a lot going through my mind. Being in the state that I was in, depressed, angry and I really did not know what to do with my life. My relationship with my family began breaking apart.

Realisation and encouragement

It was in the year 2017 that I thought to myself; I had to live the life that I wanted to, not the life that my family wanted me to. It was a wakeup call. I had come to the realisation that I needed to take better care of myself and plan how I was going to live my life. My sisters and mother encouraged me to go out and enjoy life. I thank them for all the support that they gave me to be more confident being out in the community. I wanted to be able to be independent with the choices I made, the people I wanted to associate with and how to take care of myself, in all aspects of my life.

I went to check out this not for profit organisation called the Diversity and Disability Alliance who introduced me to the concept of peer support, where two or more people come together to support one another in areas that impact their daily lives. I felt so intrigued and interested in what they were trying to achieve, it felt like a new chapter in my life had just begun, and it did. It gave me the confidence to be more involved with the community, better at building networks and maintaining friendships and better at connecting me with the community.

An active life

As a person with physical disability, peer support is important to me. In 2017 I joined the Blacktown Peer Support Group, run by the Physical Disability Council of NSW (PDCN). Last year I was offered paid work to co-facilitate PDCN’s Liverpool Peer Support Group.

I am also a part of the reference groups for the Canterbury – Bankstown Council and a member of the Fairfield Migrant Interagency meetings held every month, with the clear vision of promoting inclusion within the community. I’m a member of the alumni group for Western Sydney University and Wheelchair Sports NSW. I also spend my spare time going to the sports club playing trivia and playing wheelchair sports such as Table Tennis at the PCYC.

As a person with disability, it is important that I remember that I am a human being and I belong within my community, just like everybody else. Others need to know that too. I just needed to build that confidence to make me feel comfortable being out enjoying the life that I chose to live. And I can’t quite believe all the things I am doing now. I am actively using my life experience to make a difference to my community, and supporting others at the same time. All in all, I am not an extraordinary person. I am just an ordinary person living an ordinary life.

Abrahim is passionate about helping the community become more accessible for people with disabilities. From 2011- 2017 Abrahim worked in several organisations mainly in administration.  He has recently become an ambassador for Ability Links NSW and uses this role in promoting inclusion for people with disabilities and for the CALD community. Since 2017 he has been a member of the Diversity and Disability Alliance (DDA), having undertaken peer support and peer mentoring training programs. This led him to do more work with DDA as a co-researcher for the evaluation team and as a co-facilitator in DDA training. Abrahim has a number of qualifications, including the Bachelor of Business and Commerce (Accounting) and the Master of Business and Commerce, Diploma of Leadership and Management and a Certificate IV in Customer Engagement.

Many people with disability face barriers in the workplace, as a result the unemployment rate for people with disability is double the general population. The Dylan Alcott Foundation is raising awareness of this issue and working for us all to the Remove the Barrier.