Dear Clíona,

I am writing to you as a slightly older, supposed to be wiser, version of you. I would like to tell you that I have figured it all out and that I now have all the answers to questions such as why people treat you differently, what should you say to deal with all embarrassing situations and how to make the right decision every time but sadly I don’t! I am still learning and think I will be for a long time. I have noticed a few things along the way, become more comfortable with being a disabled person, and with making big and small decisions in life so here are the main things I wish I (you?) had known sooner

Embrace your weirdness – whether right now you see that as your disability, your curly hair, your taste in music or the fact that you hate marshmallows, this is what makes you you. The sooner you realise that most people are so preoccupied worrying about what you think of their ‘weirdness’ they have no time to think of yours the easier it gets. Now don’t get me wrong, I have yet to ‘lose all shame’ (as someone once suggested about networking) but being comfortable as yourself really helps. Sadly, it won’t end all the situations where society or the environment around you makes you feel awkward or out of place. These are not your fault. It will however help you make friends, disabled and non-disabled friends, who understand these feelings, don’t accept these situations and help you rant, shout or get up to mischief to try and make it even a little better.  

Some of the hardest decisions to make end up having the best results

You should be making some big decisions about school subjects and the CAO soon. It will be a process of deciding whether you should follow the path you have always dreamed of while making some big compromises because of your condition or taking a chance on something completely different. Your parents and those around you will be realistic about some of the limitations but will also support you to look for work arounds or reasonable accommodations. This will be a very hard decision to make and the realisation (yet again) that you might not actually be able to do everything you would like will be painful. You will battle with wanting to be able to do something completely if you do it at all. (That no half measures thing will be lifelong I presume.) You will ultimately choose something that you never have dreamt of initially. In doing this you will discover lots of new things about yourself and find things that you are very passionate about and committed to. It will lead to great experiences and great friends and allies. They will become some of those mischief makers I talked about above. Overall, it will be a big part of becoming more comfortable in yourself, meeting people with shared experiences and realising how other people’s attitudes and societal structures are what needs to change. Don’t give up on your other passions and interests though, there are custom made accessible stable fronts in your future!

Trust your gut

You might sometimes have a feeling about someone or a something you have to decide and I’m here to tell you to listen to it. It won’t always be completely accurate but it is usually for a good reason and if you stop, listen and think about it you always learn something along the way. Your instincts are good. Don’t second guess yourself as much and try to take it easy on yourself when you do miss something or make a mistake. You are much better at letting others off the hook than you are at doing this for yourself.

Don’t be afraid to speak up and don’t let others make you feel bad when you do.

It is easy for girls in particular I think to be continuously characterised as bossy or annoying when they advocate for themselves, others, or things that are important to them. This is not fair and you definitely shouldn’t let it stop you.  Yes, it is important to listen and consider other people’s opinions but they should offer you the same respect. You should also feel free to question doctors and other professionals when you meet them even if they don’t always appreciate it. That time when you are on the operating table being prepped for surgery stands out in particular but you have been doing this in two languages since you could throw teddy bears across a room. They didn’t appreciate it then either but it was effective. You know your body and it is your decision.

Don’t be embarrassed about the close relationships you have with your family and support network but don’t be afraid to step away from them either

Lots of people, particularly non-disabled people, will not understand the close relationships that you build with family and friends. These relationships might be because you rely on them for support or more than likely stem from the fact that they share experiences (good and bad) with you, laugh and cry with you and get angry at the same injustices as you. You shouldn’t have to justify this. Your life is better because you have these relationships and you will come to treasure these connections as time goes on.

This shouldn’t stop you from deciding things on your own or following your own path though. Stepping out on your own, choosing your own supports and getting your driver’s licence will all help with this. The people close to you won’t always agree with you but those that matter will appreciate that it is important for you to do this and support you. And sure what are a few debates massive rows between family and friends anyway!

Finally, I’m not sure I should tell you this and it might not make any sense yet but they do eventually convince you on the PhD thing so don’t make too much of a fuss.

Good luck and enjoy the next few years,

Clíona