Breaking Barriers
Hi everyone, my name is Xander. I am a 16-year-old teenager with a physical disability. I am a member of the Children and Young People with Disability Australia’s Youth council.
I was diagnosed with my disability at age 4 and I have been subjected to some very poor attempts early on, at inclusion. I have also been extremely fortunate to reap the benefits of being part of inclusive environments. These environments demonstrated a good understanding of disability by having a range of suitable adjustments in place, not just your typical wheelchair access requirements.
Inclusion in the Early Years
I had some very bad experiences with inclusion initially in the education setting. There were lots of well-meaning people, that just did not understand the complexities of various disabilities and the impact it has on young people.
I felt like I was an alien! It was like I was speaking another language, often feeling isolated and forgotten at school. My mum became my biggest advocate and spent countless hours insisting on adjustments and reaching out to various organisations for advice. Essentially, she armed herself with knowledge, which became power, which in turn became the solution for all. It was evident at the time that those outside of a personal connection to disability struggled to understand.
The Disconnect
You see, I have learnt that it is difficult for people who do not have “disability” in their daily life to actually understand our perspective. Often what they determine is “inclusion” is very different to what we do.
Sometimes you can find that words or policies do not appear to translate to appropriate, meaningful ACTION on inclusion.
This disconnect is often very difficult to repair unless there is a wiliness by general society to listen to, and strive to understand, the perspectives we can share.
This disconnect can be overcome with knowledge determination and planning. Today’s conference Kindred has organised, helps to repair any disconnect by providing support, knowledge and hopefully confidence to empower you to continue this work with your child.
You see, I think parents and caregivers have a superpower, as you are in a position to let your young person know that they are valued. You are in a position to let them know that their voice (in whatever form they can manage) is important to be heard.
This messaging is what I received consistently when things around me were difficult. It kept me going and gave me the strength to work with the supports around me to advocate for myself.
Inclusive Decision
My varying experiences with inclusion so far have armed me with valuable insight and a determination to help others understand that “inclusion” should never be an afterthought. I would like to see a society in which all people understand that unless we make “inclusive decisions”, inclusion remains a word without real meaning. It remains a word without appropriate representation or action plan.
I’d like to explain what I mean by Inclusive decisions. They can relate to all aspects in your child’s life. For example, in my early school years, lots of really nice staff would make decisions without consulting the support team. They would not speak to students with disabilities or their families before making plans. We were just expected to fit into the process, which gave us the message that we were a burden, we were not valued, and essentially, we were just an afterthought. I felt totally cut off from the school life my friends were leading as I was trying to fit into an environment that never took the time to consult with the very people they claimed to support.
They never stopped to ask me or my family if we felt included, their policies and statements said we were so it MUST BE SO!
In my younger years in the wider community, when enquiring about events, we were often told things like “yes this event is inclusive” Their explanation was that because it was possible to push a wheelchair around that in itself was all that was required to be inclusive. Somehow, they didn’t think about access to disabled toilets or having all displays on the ground. They seemed to think it was acceptable for the disabled person to view a display from the ground whilst out peers walked up steps to view it up close. I hear and see very few of these stories now as I think society has gotten a little better over the last 10 years. It is always important to remember thought, that they do require our input to gain perspective and make change.
Through my experiences, I feel society in general needs to make inclusive decisions BEFORE there can be a claim of providing an inclusive service or an inclusive environment. By that I mean that the appropriate people are consulted PRIOR to ANY decisions.
It can be very disheartening for a young child to feel and see that disconnect, particularly at school when trying to form and maintain friendships.
Being Heard
I still remember the huge relief I felt when we spoke to my high school about inclusion. After many years of receiving blank faces from others when we spoke, I did not have very high expectations.
The school actively listened and showed a keen interest for me to explain further about where I thought inclusion failed. Instead of receiving countless excuses why they had to follow a set plan regarding inclusion; the faces of those across from me were seeking further information from ME with keen interest. They actually GOT IT! This was one of the most memorable days in my life.
Now at school I feel valued and included. Consultation works very well with all appropriate people. We all work together, to not only make my school life more inclusive, but that of other students with disability, also.
Over the years, outside of school, inclusion was always a little easier. Access to supports, to ensure things were set up for me to be involved worked with a few phone calls, investigation and problem solving. The skills mum developed in problem solving, soon helped with some of the issues within the school setting, at the time. The consultation required in this setting, however, was generally instigated by my Mum, as again, society seemed to have little understanding of what you need to do to ensure inclusion.
The most important thing my Mum ever did to help me be included, was to listen to ME and work with ME on ideas. Too often others would make decisions for me, without even thinking of asking what I thought. You have no idea how powerful that simple action is to a child with a disability, who can often feel disconnected to others!
Finding a way for your child to have their say and be included in decisions about them should always be WITH them. That message – that you can start at an early age – will have lifelong benefits.
Empowering Families
To assist young people to live an inclusive life, I think it is important to continue with, and increase the number of programs that assist parents, and empower them, to seek answers and support.
I know my Mum at times in my younger years, struggled to feel she “had the right” to question this, or ask for wheelchair access etc.
This was relevant even in relation to being invited to my friend’s birthday parties; where Mum had to draw the courage to speak out about my needs and ask for assistance for me to attend.
At 16, I now know that this was not easy for Mum, as back then, she did not initially have access to services and people to talk about inclusion; and my rights to access it as a disabled child.
Once Mum and I were connected to a local disability organisation after my diagnosis, I had access to some group led activities run for disabled kids. I did enjoy these for a while but longed to be included in activities with my school friends, I wanted to be the same not different!
Too often, even today, segregation happens just because mainstream services find it too difficult. This should not be still happening. There is always a place for Disability specific activities or programs, they are great and for many they are preferred. I think the important factor is that the young people with disability are given the choice to choose the option that best suits THEIR individual needs.
I have found Local council events etc are getting better at inclusion but still struggle to accommodate those (like me) who cannot catch public transport. They need to get better at providing adequate access to events through provision of disability parking bays, in numbers required for large gatherings. Again, the more we all challenge organisations to DO better the quicker we can enact change.
Having access to organisations that can provide not only information on inclusive activities within the community, but also provide the knowledge and strength to request inclusion; was a game changer for us! I am extremely grateful for Mum’s courage to seek support to ensure my inclusion.
I think it is vital to parents to have this support, which I now see fairly frequently in family conferences like this today. They are brilliant and represent the positive changes that have occurred since I was a very young child.
Tips For Parents of Young Children with Disability
- To keep reaching out for support.
- Empower yourself; ask questions, seek appropriate adjustments.
- Be brave, knowing you are not alone, and your child will forever remember your support.
- Offer solutions whenever possible as it can help those without disability in their daily life to understand and make change.
- And most importantly, whenever possible listen to your child’s views on inclusion and how their disability impacts them. Use your superpower to spend the time to empower them to lead their best life.
As you can probably tell, Inclusion is important to me. You, attending here today to talk about inclusion for someone in your life with disability, is an important step you are taking.
Each step you can take in this directions helps to build a world in which inclusion is at the forefront of everything we do in society.
Thank you all for listening to my thoughts today. I hope you have gained a little insight from the perspective of a disabled teenager reflecting on my younger childhood.
THANK YOU for recognising the importance of advocating for Inclusion in your young person’s life.
Xander Wroblewski (he/him) is a 16-year-old high school student with Ehlers-Danlos Syndrome and a proud member of the LGBTQIAP+ Community. Xander is passionate about advocating for all people with a disability, especially his peers, within the education system. Xander has co-hosted webinars for CYDA on the topic of inclusion and early intervention sharing his lived experience tips.
This story is from Xander’s presentation at the Family Conference 2023, co-hosted by Kindred, Plumtree and Now & Next.