Julie Helen: My cerebral palsy presents challenges but it has also given me so much

The weeks are flying by. 2024 is starting to close in. Yet, I’m at a beginning with a new job. I don’t like this stage of unsure footing, trying to find my place, trying to be fair to myself about acknowledging cerebral palsy, but not allowing it to overshadow the other important things to know about with me.

I haven’t started again with a whole new team of people since 2016 so it has been a lightning bolt of a reminder of just how much we learn over the years, the experience we garner along the way, and the people we become in each setting. So, as always, I’ve learned a few things I think I can share.

I will always have the added layer of being a disabled person in a work environment. Whether I like it or not, I am a trailblazer, a minority, and there’s figuring out to be done. 

I’ve done something new in naming my cerebral palsy regularly, rather than saying disability or disabled person. I’m not sure anybody really knows what disabled or disability means and it can mean very different things to different people depending on how they have experienced their disability.

Cerebral Palsy belongs to me. It has a series of characteristics you can Google if you have never heard about it, and it will tell you how there are at least 17 million people around the world with similar characteristics.

Some of those characteristics might make you wince like pain and muscle tightness and joint problems, but you’ll also see increased determination and I’ll grab that with both hands and claim it.

My cerebral palsy presents many challenges but it has also given me so much. I know how far I have come, my life milestones are precious and I delight in the ordinary life I have built, block by block. I don’t fear change or ageing because one month I can feel exhausted and the next I can feel great, that’s just the way it has always been.

That does mean that adding something new is full on and tiredness can really last, but it just is the way it is. I’ll start anyway. I’ll try anyway. I’ll keep going anyway.

I’m trying to be sensible in working part-time at a manageable level. The hilarious thing is, I never truly know where my limits are until I’ve surpassed them. My body takes training, I have to do things over and over before they become automatic, and some tasks will never be automatic, but because other parts of my brain are really fast, I can compensate. I’m proud of that.

I hear myself telling stories about cerebral palsy to any new colleagues who will listen. I hear them coming out and I know I’m trying to explain where I sit in the world, what it feels like in my shoes, and I also find myself searching for common ground too. After another little while, all the serious stories will be told and I won’t need to tell them again, people will just know, and that’s the part of work I love, when I know what I’m doing and others no longer wonder what I do and don’t need help with, and they feel comfortable asking or even cracking a joke at my expense. 

They will know I’m happiest when I’m laughing at myself.

My advice to myself right now is to be patient, with myself and with the new situation. The water will find a level. I can keep trying, learning, listening and talking. Relationships are my favourite thing about work, so I’m diving in!