“If you don’t like something, change it. If you can’t change it, change your attitude. Don’t complain.” – Maya Angelou
So, a lot has happened lately and I just want to fill you in about what’s been going on in my life.
First off, I was supposed to be in Berlin right now (14th July – 24 July). However, early last month, my host that I booked with via AirBnB informed me that her apartment cannot accommodate a ramp inside and thus be made accessible, despite her thorough efforts. The host was very kind and helpful (and even offered to help me find alternative accommodation), but unfortunately I have decided to cancel my holiday for this year. I’m just finding it too difficult and stressful to sort this for now. This is the situation we often face as wheelchair users when we wish to go on holiday. It makes me very frustrated, as it feels like society is stopping me from just living my life to its fullest potential and only wants me just to stay at home and be unhappy. I just feel cancelling my holiday is currently the best option for me, as I just don’t want to rush anything or make a decision in haste. I feel very sad about this because this would have been my first holiday in over 15 years and the first time I’d be going without my parents considering now I have a support workers via a good care package. Though hopefully I will be able to go on holiday to Berlin in the future.
As you may remember, earlier in the year I was allocated some tickets to a couple events for the 2014 Commonwealth Games in Glasgow as well. Sadly, I won’t be going to this too because since the beginning of the year I cannot find any accessible accommodation in Glasgow, and even the accommodation I can find that is very far away is either not accessible or well over £3,000.00 just for the 5 days I need. Oh well, forwards I go.
On the job side, I made a big upward step. As you may have seen, I was recently selected to be a Festival Guide for D&AD’s New Blood earlier this month. You can read more about my inspiring time with D&AD here. I also have two interviews this week at the BBC; both are for a six-month placement that would be from October 2014 to February 2015. Wish me luck that I get one!
Although I wish I could get a job in the creative industries but I’m still struggling with this. In my opinion (from experience for over two years), the adverting industry in particular is challenging to breaking into, especially as a disabled person. Quite surprising, considering I have a unique experience / skills I can offer and that according to the UN disabled people are the largest minority in the world. It is as if most people are not willing to support me and give me any opportunity. I feel as all my friends are doing some amazing things, but I’m just stuck here wanting to do more with my life and being disappointed with myself not being able to physically do so.
If that wasn’t enough, I am still waiting to get funding (of about £35,000.00) for my new to meet my complex needs. The local wheelchair services across the country don’t have the skill-set/knowledge or experience (and are not fit purpose) to meet the requirements of clients highly complex with wheelchair and seating needs such as myself; and the NHS takes forever to fund anything since there is no way I am able to fund this myself. No one really understands that I need to have ongoing support specialist who know how to deal with my wheelchair and seating needs, otherwise my condition will just deteriorate faster than it should.
Despite me trying (and working) very hard just to get on with my life, this is all very frustrating. I am tearful. I am angry. I am tired. I am screaming inside. The pain of life kicking me often is intense, but I focus on the good I have and feel grateful for everything.
Thankfully, there are some amazing people who are so continuously kind and supportive. The specialist, excellent team at 3C wheelchair & seating service have been thoroughly incredible helping me with my complex postural needs in my current situation with my wheelchair and seating. They are continually my choice to meet my needs and in their own words they are “just trying to keep me alive.” On the career and care front, it is also great to have the support of some special mentors and some wonderful organisations such as D&AD and the Muscular Dystrophy Campaign amongst others.
All of which is most prominent in my life by the fantastic support network I have, namely my lovely family and awesome friends is brilliant too.
I believe the future is what I want to be and will get better soon, as I don’t believe in dystopia. I am going keep working hard without fear and do as a smart fish once said, “… Just keep swimming…” Staying positive and laughing at myself is the only way I know how to live.
To fear failure is to fear life; to fear life is to fear living; to fear living is fear death. FEAR does not take me: I take the FEAR. So I aim to be bold and be fearless — I am not afraid and wish to live my life to its fullest potential.
Like Maya Angelou best says and sums up how I aim to live my life everyday:
“My mission in life is not merely to survive, but to thrive; and to do so with some passion, some compassion, some humor, and some style.”
So, watch this space for greatness!
Listening to “The Pretender” by Foo Fighters