Working With Chronic Illness Ft The National Youth Disability Summit

Chronic illness undoubtedly makes life unpredictable, unfortunately in that it also makes me pretty unpredictable and with that, unreliable. Not by choice but by situational factors out of my control. Reliability is one of the main things people look for when hiring someone for work. And understandably so, but this becomes a barrier for a huge majority of people living with chronic illnesses and disabilities, especially youth. People want experience but to have experience you first actually need to get a job and/or education. At least adults that become sick or disabled later in life have past work experience to show for.

My health lead me to have to drop out of school at the beginning of Year 10, admittedly though, I probably have the education level of a Year 7 student as my ability to learn and retain anything fell apart as my body did.

I’d had small jobs before my health got bad, when I was ten I’d taught myself to iron and set about ironing my neighbour’s business shirts. At thirteen, I had a winter working at a friend’s farm packaging fresh produce and then later selling them to buses of Italian tourists that would come visit (easily a core memory I will cherish). But that was when my body was functional, I could rely on my body to complete what was necessary and in suit, people could rely on me to do so.

I genuinely didn’t know how I’d ever work with my health as unstable as it is, or at least work for anyone else. I think in most cases this is still reality, as sadly there aren’t many businesses that are able and willing to accomodate when an able bodied person can do the same thing without them needing to make any accommodations for them.

But, I did get lucky this year with my first proper casual job. At the beginning of the year I signed on with Children’s and Young People with Disability Australia aka CYDA for six months as a part of their 2022 Co-Design Committee for their second ever National Youth Disability Summit.

Admittedly, I had my reservations about signing onto the Co-Commitee. I’d never been committed to such a long term project whilst my health was so unstable. For most, six months doesn’t seem like a long time but with an unpredictable health condition that can allow me to go from fine to unable to function in a matter of minutes. If I’ve learnt anything from over the past few years is that so much can change in a few months.

And no, this isn’t the bit where I tell you how I proved myself wrong and my worries were for nothing. That’s not real life, or at least not my reality. My health crashed completely (yeah again, are we really surprised at this point?) literally a month or so into planning the summit. I was teetering on the edge of being admitted to the hospital and had been put on house arrest and under strict no human contact by my Dr as my immune system crashed as well, leaving my body completely unable to fight off anything. I had been mainly self isolating since December anyway, as my body felt a bit wobbly and I knew it couldn’t take anything else on top of what it was already dealing with.

I thought about pulling out, it was still early days and I hoped that way I wouldn’t affect the Co-Design team as much as it would have had I have had to leave further down the track.

I’m really glad I didn’t though, I’ve always been a strong believer in you can’t wait for someone else to save you from your problems you have to save yourself. Having things to look forward to and work towards has always been how I’ve coped best with being bed bound and dealing with health crisis after crisis. I can’t control my body, but I can give myself baby steps that make me feel like I’m going somewhere even when physically I’m stuck stagnant.

So how do I work with a complex condition? I want to be transparent because I have spent so long looking for others in my situation trying to see how they manage work and what is realistic and maintainable for them. Keep in mind these are just my hours and capabilities, I don’t speak for all the Co-Design team, as everyone has different workloads depending on their own capacity levels and situations.

All our work has been completed online, through captioned (with the option of interpreters) zoom calls, google slides and other documents. All of which I’ve completed from bed or the couch (yeah even the video meetings, I literally met the CEO of the organisation whilst I was curled up with my heat packs and cosy blankets in bed).

I’m on the Disability pension, the lower level as I’m still under twenty two years of age, meaning I have a really small amount I’m allowed to earn each fortnight and so I have to base my hours around that to ensure I don’t go over my pay limit. A side note to this, oftentimes people, especially young people with disability are taken advantage of and paid less than the basic living wage. Meaning, even with the hours they are allocated they don’t even make close to their pay limit each fortnight. This is a real problem for an already struggling minority.

Again, I really lucked out with my first job as CYDA is nothing like this. The maximum a fortnight is four to five hours, but that will be split into small intervals over the 14 days, and by small intervals I mean literally ten to twenty minutes work at a time some days. There are weeks I can barely manage an hour’s work max, it all depends on how my body is fairing and what stage we are in planning as to how many hours work is available to be put in.

I’ve slowly learnt to speak up when something isn’t manageable for me or I know would be more harmful then helpful for my health long term. I’m really loving utilising the term of capacity levels as it doesn’t have the negative association or feel of failure with it. I’m just simply voicing what I can do and I’ve been really lucky to work with people that are understanding and flexible. This has honestly been the reason for my ability to continue with the summit.

As Ethan, one of the other Co-Design committee members put it so well – “CYDA gave me an opportunity when I thought work was an impossibility”. My own little add on is that I hope to see more businesses willing and able to do the same moving forward. Because work is not just work, it can be a lifeline and sense of connection for those usually isolated by situations entirely out of their control.

More On The Summit

**Image description:** A graphic tile with the National Youth Disability Summit 2022 logo, saying ‘Registrations are now open!’. The logo has a pale orange circle in the centre. There is a smaller and darker orange circle that overlaps on the bottom left side of the larger circle. The smaller circle has a white outline of a light bulb and 6 small dashes around the bulb to show the light is on. In capitals, the words ‘National Youth Disability Summit’ are written in dark grey font. They appear over the large orange circle and slightly overlaps the background. ‘2022’, is written in a larger, dark grey outlined font and is in the circle underneath the title and next to the smaller circle.

For those interested, the second National Youth Disability Summit will be running between the 5th and 7th July 2022. The Summit is designed by disabled young people for disabled young people!

Three key themes have been identified for the Summit by the Co-Design Committee: –

Education
Advocacy
Medical Systems, Diagnosis and Emotional Fatigue of Disability

The Summit will have a mix of keynote presentations, interactive workshops, panels and networking opportunities. Sessions are spaced out to give plenty of breaks and this means participants can join as many or as few sessions as they like.

Being held in NAIDOC week, the Summit will be diverse, inclusive and accessible and will celebrate and champion intersectionality and collaboration.

Participation is free for all young people with disability and chronic illness (diagnosed and not diagnosed) aged between 12 – 30 years. The Summit celebrates and fosters disability pride and connects young disabled people with each other to amplify our collective voice.

While the Summit is a youth autonomous event, if you are over 31 years of age we invite you to attend the Open Day on Thursday 7 July. On the Open Day families/caregivers, service providers and policy makers are welcome to come along to hear from young disabled people about what is important to them!

Attending the Summit Open Day is an incredible opportunity to hear directly from young people with disability about what matters to them. We ask that you be mindful of this in the way you engage within the session.

You can register for the free event here: https://www.cyda-nyds.com/

If you have any questions or would like more details, please visit the Summit website below or email CYDA on nationalyouthsummit@cyda.org.au