Happy International Women’s Day to You and You and You, But Not You…

Happy International Women’s Day!

I’ve been thinking a lot about how I feel about the celebration of Women’s Day at such a momentous time for the women’s movement, so many young women proudly owning their power, undoubtedly a very exciting time of progress.

Buy why do I feel slightly conflicted, a bit jaded, indifferent, even a little sad?

The reason is because as a disabled woman I simply do not feel included in this new wave, I don’t feel like the needs or nuances of women with disabilities are being considered, as with so many mainstream movements we are being excluded, which is kind of ironic given that we have many, many years of experience down in the trenches campaigning for hard won basic rights (which the current government is trying to remove again) and we continue to push against enormous barriers to equality.

Let me being with some harsh facts, disabled women and girls are more likely to experience abuse than able bodied women; disabled women are twice as likely to experience domestic abuse from their partners than able bodied women, more severely and for longer durations. Vulnerable disabled women and girls are more likely to experience physical and emotional abuse from care providers than able bodied women. Disabled women are more likely to be unemployed and on a lower salary than able bodied women, disabled women are less likely to go on to higher education, disabled women are less likely to be represented in the mainstream media and consequently suffer from low self esteem and lack of confidence. If you’re in doubt as to how dire the situation is for women with disabilities, earlier this year the UN criticised the UK’s utter failure to uphold the rights of disabled people across education, social care, housing, health, transport and work.

Consider the experience of women with disabilities in developing countries, with zero access to any of the mobility aids or support that could improve their lives, countries with no funds to develop an accessible infrastructure, cultures with no understanding of physical disability and no tolerance for any intellectual disabilities or learning difficulties. Disabled women all over the world are many years behind their able bodied counterparts in terms of equality and inclusion, even in the US the government are trying to pass a bill to undo some aspects of the ADA which would effectively remove certain rights from disabled people in America.

Whilst I wholeheartedly support the fight for equality and am incredibly pleased to see so many use their voices for positive change, I can’t help but feel that some of us are tackling equally if not more important issues and we could do with the support of other women with bigger voices.  A movement that prides itself on being diverse and inclusive is falling short of the mark. Most disappointing is when organisations or groups make a statement on behalf of all women then proceed to provide a list (women of colour, transgender women, cis women, lesbian, bi sexual, etc) but frequently disabled women are not on that list, if you intend to include all women then leave it as all women, a list creates segregation to those of us not on that list.

I’m so fed up of publications, brands, events, pop ups  and campaigns patting themselves on the back because they are so on point with their inclusive approach to diversity, with their vivid celebration of different ethnicities, body types and abilities. Hmmm….I’m still not seeing disability included in that diversity roll call. I first appeared as a model with a disability in magazines way back in 1994, I thought this would be a change, other girls would follow and it would be the norm to see young women with disabilities in editorials. Nearly 25 years later and there has been very little progress made aside from when a brand wants to get a quick hit of positive publicity. Cynical, moi?

If you are hosting an event and you truly care about diversity, look at your speakers and your audience, is disability represented? Is your event accessible? Are you being truly welcoming and inclusive to all who may wish to attend? Have you added a note to let attendees flag any access requests? You’re not likely to know if you have any attendees who are hard of hearing and may need a BSL interpreter if you don’t ask the questions.  There is no point proudly saying your event is open to all when I arrive and have to be carried up steps and there is no accessible loo. This goes back to my earlier point that we as disabled women are still fighting for the most basic rights, like the right to go to the toilet in private! I appreciate that some may feel safe spaces are necessary in public buildings but whilst some of us are still fighting for accessible toilets can we please put the safe space slightly lower on the agenda.

For years women have been silently angry and frustrated and are now speaking out, loudly, it’s fantastic. We too are angry and frustrated, but it seems that able bodied people get very uncomfortable around angry disabled people. Why?? Why are people so fearful of anger, why do we compliment those who suppress their anger and frustration? It’s an emotion like any other, a response, a reaction and can be a positive tool to galvanise and motivate people and organisations into action. However if you are disabled, it’s a problem; angry or confrontational disabled people must be bitter about their disability, every emotion we feel must arise because we are bitter about our disability. Newsflash, this simply isn’t the case.  What frustrates me is attitudes and access, I’m totally fine with my disability, I just wish everyone else could be too.

I’ve read pieces by women saying they felt that for years their default approach was to be quiet, apologise, be grateful, make themselves smaller. I have to say I have never felt the need to this as a woman, perhaps being the eldest girl with three younger brothers and very encouraging parents I’ve always been outspoken as a girl and woman. However I have felt the need to do all of those things because of my disability…to make able bodied people ok with it.

I’ve apologised for the space my wheelchair takes up, I’ve apologised to idiots walking slowly in the street texting on their phone oblivious to me trying to get past, I’ve apologise for the noise a squeaky wheel made in a library, I’ve apologised to the guy who fell over my wheelchair in the supermarket last week, I’ve paid to drink in bars and dine in restaurants who have failed to invest in a ramp or an accessible toilet. I rarely speak out about the discrimination I face on a daily basis because I choose to focus with living my life rather than exhausting myself yelling at the woman in the disabled toilet at work changing into her cycling gear while I’m desperate to go to the loo before heading into a meeting.

A while ago I attended a Q&A with a popular feminist author and although the venue was accessible that attitude was not, I have rarely experienced so much negativity, simply trying to navigate the foyer was a trial, people tripping over me, being slow or reluctant to pick their bags up off the floor so I could move past, and a look of shock when turning around upon hearing me say excuse me may I get past. Really people?? A woman in a wheelchair is a surprise, I thought everyone was ‘woke’ now?  I thought the sisterhood was supposed to be all inclusive, celebrating everybody regardless of physical ability or appearance, I also thought the Paralympics had educated you all that many of us leave the house and have active lives now, it was so disappointing, it felt like the purveying message was we only want feminists that look like us.

I’m not looking to create tension or divisions, I’d like us to unite, to work together to improve things for all women, after all there is strength in numbers, but we too need to be heard, our opinions considered, our experiences acknowledged,  but this can’t happen until we are invited, included and given a voice. I might not be articulating this as well as I would like to, it’s a complicated issue but it’s like there is a divide between myself as a woman and myself as a disabled person and to be honest, the disabled person is the one who has felt discriminated against, vulnerable, insulted, patronised, excluded and forgotten.

I pitched something along these lines to a national publication a few years ago, but it was rejected, I worried that I just sounded like an angry disabled woman having a rant, I doubted myself and thought I must be only disabled woman feeling this way, maybe there was something problematic with my opinion. That was until I read the word intersectionality, I hadn’t heard about intersectionality, it was an entirely new concept to me until I read a number of pieces by brilliant black women writers, much of which enlightened me to be more aware of my own privilege as a white woman, but also described many of the feelings I felt as a disabled woman, intersectionality explained what I had been feeling, a kind of segregation from this new mainstream celebration of feminism.  So this time I’m putting it on my blog, if even one organisation reads it and changes their approach to be more inclusive it’s an achievement.

I was overjoyed to see a film about a young deaf girl, The Silent Child, win an Oscar at the Academy Awards this week, and thrilled to see Rachel  Shenton sign her acceptance speech, a worldwide audience seeing inclusion in action. (Less so for The Shape of Water, but that is whole other blog post.) Consider for a moment the positive message that sends to young hearing impaired girls, you too can do this. As an actress I’m aware that many of the roles I have played don’t accurately reflect my experience as a disabled woman, for a start I’ve only recently played a character who has a job, yep, all previous roles were characters without a job. We need to address the stories we are telling and what messages we are sending our young girls.

When Frances McDormand accepted her Oscar, that moment when she asked all the other nominated women to stand up was fantastic, she said we all have stories, they need to be shared, and as a woman with a disability I’d like to add our voice, we have stories to tell too. She also raised the issue of inclusion riders, a contract clause that requires a production meets a certain level of diversity ensuring inclusion of under represented groups in cast crew. A brilliant move on her part to publicise the existence of such a clause (though only the big players will have the bargaining power to insist upon it in their contracts). What was infuriating was some of the reporting explaining an inclusion rider, some articles explained the purpose of the rider and then went on to list the diverse groups that should be included; women, people of colour, LGBT but didn’t include people with disabilities in their list, for crying out loud, either include us in the list or don’t set out a list!

It’s exhausting having to shout up, to repeatedly raise your hand and ask what about us?  With a little consideration we can easily be included and contribute to the current movement; we want to be part of it and celebrate being a woman too!

So what’s my overriding message here? Able bodied women:  You’re frustrated, you want to be heard, you want change, you want equality, you want to be part of the progress, you want to contribute to a brighter future for the next generation of girls. Guess what? #MeToo

 

Lifting the Veil

I’ve not blogged in ages, 2017 has been a tricky year since my dad passed unexpectedly in December and though I do have a few blog ideas in the pipeline this topic has been bubbling about in my brain for a while and it seemed fitting to post on the anniversary of my accident – 27 years this year – whoop, whoop to me! I appreciate that for many people it might seem odd to celebrate a date on which an accident left me paralysed but in truth the alternative could have been much worse, it’s a celebration of survival.

This time of year tends to be a period of reflection for me, looking back over life since my accident (a few other anniversary blogs in the archives), I’ve realised in recent years that I have spent a lot of energy making out that my life as a paraplegic is so much easier than it actually is, a mind set I developed very soon after my accident, a coping mechanism for myself but also a very effective way of swerving people’s sympathy, I’m not good at dealing with sympathy, it makes me feel claustrophobic, and has the opposite of the intended effect, it makes issues seem so big as to be insurmountable; by minimising things I could swerve the icky sympathy and convince myself that paralysis was no biggie.

I minimised so many things, so much rejection, so many complications, but in minimising them I was also unconsciously minimising myself, my own achievements and accomplishments; I’ll admit I can seem very confident but I actually have rather low self esteem, I don’t feel like I’ve achieved nearly enough and I play down everything that I do and I now suspect the two may be intertwined. In minimising my injury I minimised me.

I was a teenager, I didn’t want to be different, I didn’t want to be forgotten, I didn’t want to be thought of as an inconvenience, a burden, needy, dependent, weird, ugly, unsexy, boring, dull, a problem, a medical disorder. I didn’t want to be left out or excluded, I wanted to be included. I didn’t want to make a fuss, (ok, occasionally I do like a massive fuss but there’s a time and a place) I developed what appeared to be a teflon skin, it was necessary in order to seemingly deflect with whatever inappropriate or hurtful comments strangers or sometimes even friends might make about my disability.

Here’s an example of the kind of bullshit that regularly comes my way; strangers I’ve met in bars think it’s perfectly acceptable to ask me incredibly personal questions, if I can have sex, can I have children and can I orgasm? (In case you’re now wondering the same thing, yes, yes and yes.)

While I’m raising the topic of questions, let me just paint this scenario for you, guaranteed to happen on most nights out. I’m having a great time with friends, chatting to new people when curious Cathy or eager Eddie wants to ask me a question…

To be clear, I’m prepared to answer the question, it doesn’t upset me at all but ask yourself, are you prepared for the answer because let’s be honest, it’s unlikely to be a happy story is it?

I’ve no qualms talking about my accident but f*ck me, timing people, it’s a total buzz kill in the middle of a fun night out and you’re likely to get all over emotional….

You ask, I answer, you go silent, your arse clenches, you maybe whisper ‘fuck’ or ‘Jesus’, the temperature around us drops about 10 degrees and you say how awful it is, I say ‘nah it’s fine, it was years ago, hey shit happens’ anything to restore the mood to what it was 30 seconds ago and use my energy to undo the tension you created. You may also be crouching down at this point because you’re keen to be at my eye level and boy are your ham strings feeling the burn, but now you’re a bit worried about offending me by standing up and complaining that your legs hurt. So I say ‘you don’t have to crouch down there’, yup me making you feel better again. You tell me about an injury or illness you suffered that left you paralysed for 2 weeks so you know how it feels. Excuse me? 2 weeks? Wow, yeah you totally get it, those 2 weeks must have been so similar to twenty seven years. Then, if I’m really lucky you’ll let me know that medical science is making great strides, um yeah but not for a 27 year old spinal cord injury. Again, there I go minimising, minimising my experience, this time to make you feel better.

There is also the example of the instances when I minimised to make myself feel better, usually during an encounter with the delightful f*ckwits who respond by telling my that I’m an inspiration because if it had happened to them it would be so unbearable that they would probably kill themselves. I used to assure these arseholes that it really wasn’t all that bad, so much more to life, etc, etc. All of which is completely true but what angers me is that I continued to give them my time and energy, if you think so little of life that you couldn’t cope with life sitting down then maybe you need to reassess your priorities; whatever, it’s your issue, not mine and I shan’t be expending any more energy trying to convince you otherwise.

I cannot believe how many times have responded with ‘shit happens’, to ‘it could be worse’ playing down my life experience like it’s no big deal. Problem was over the years I  believed it too. I thought of it as a blip, a curveball, a detour. Years before social media i was effectively filtering my experience, photoshopping some things out, flaunting the good stuff, (yes despite the nature of this post my life has largely been very good stuff).

I never saw it as a life changing accident that changed the course of my life. That was far too big to contemplate. It was so much easier to fit in, always smile, never complain, never explain, go to all sorts of lengths to be easy, breezy cover girl, make sure everyone around me didn’t have to think about it more than necessary. Then I didn’t need to think about the serious injury that happened to me, that changed my life, the life of that young, happy 14 year old girl girl. A child. A child who became an adult over night. It was so much easier to diminish its impact than feel it, to feel for the loss of potential of that teenage girl. Her potential. My potential.

I hope this isn’t coming across as angry or self pitying disabled woman with a rotting chip on her exceedingly muscular shoulders, that’s not where I’m coming from, I don’t carry this around like a cross on my back, I just thought it was time to ‘lift the veil’ or turn the filter off. It was only after I broke my leg in 2015 and ended up on bed rest again that I truly began to acknowledge what a huge thing had happened to me 25 years earlier.

As much as I try not to let my disability dictate my life it does inform some of my decisions and life choices. I fought so hard to be included but I’ve also had to accept there have been many times in life when my disability has made that impossible and I have to accept exclusion. I’ve very rarely been in friend’s homes as so many are upstairs or downstairs, it could just be they think I’m an unsocial oddball and no one wants me over but I hope it’s the stairs. Events that I have missed because there no wheelchair access and it wasn’t feasible to navigate the stairs, birthday or engagement parties where I just couldn’t face the slog upstairs or being dependent on the kindness of bouncers so I feigned illness or conflicting plans. I love a rooftop view but I very rarely get to go up on rooftops whether in bars, hotels or friend’s houses, there is no access, though huge props to the chauffeur in Paris who carried me to the very top of the Eiffel Tower many years ago. And a big bonjour to the 3 exceedingly fit firemen who carried me up a moving escalator out of the Louvre last weekend.

Here are a few questions for you to ponder…

How many wheelchair users do you see on your rush hour commute? Think about it, you’re on the packed 7.14am to Waterloo or Liverpool St, where’s the wheelchair squeezing in?

How many disabled people work in your organisation?

How many disabled friends do you have in your social circle (aside from me)?

How many disabled children are in your child’s school or play groups? Have you invited them over for a play date or a birthday party?

You’re away with friends at a luxury hotel or a spa, how many times have you seen a pool hoist?

Independent retailers, coffee shops, restaurants, bars, I want to support you but is your premises accessible, you support me and I’ll support you.

Is your feminist project inclusive and considerate of women with disabilities?

How often have you parked in a disabled bay or used a disabled loo under the rationale that you’ll only be a few minutes? The few minutes that I really need it before a meeting, a job interview, an audition, a flight, a train. FFS.

How many on screen portrayals of disabled people have you seen that you believe are an accurate representation of living with a disability.

Can you name 5 famous people with a disability who are not Paralympic athletes?

How many disabled people have you seen at your local gym, yoga or pilates class?

Have you considered what it’s like to have difficulty having privacy, struggling to find solitude with nature in a beautiful place because it’s so damn inaccessible you need help to get there but then can’t just chill with your own thoughts because you have a companion in tow to heave your arse up a hill.

No matter what your answers are I’m not being judgmental I just wanted to give a pause for thought, to consider inclusion vs exclusion.

I used to book dinners and parties in utterly inaccessible venues because they were hip or cool (eurgh) but haven’t for some time, your business is not getting my money if you can’t squeeze in a disabled toilet and keep it clear. (A big thanks to the companies I’ve worked for who have supported this when organising team events.) I would get carried up and down stairs to be at all the best parties in fear of missing out but no more, if it’s not accessible there better be magic money tree at the top of those stairs. That or Liam Neeson and Idris Elba waiting for me with an ice cold margarita.

When I moved to LA I had to work hard at making new friends, that’s no mean feat as an adult, to find your clique, there’s a lot of trial and error, lots of forcing yourself out to meet new people, now imagine doing it all in a wheelchair, explaining yourself, being chill and fun, answering all the wheelchair questions again, the upside being that at least most places were accessible so I didn’t have to call and check before hand. Yes, that’s what I do, you invite me somewhere and I research it, I use Google Maps to zoom in on streets so I can see where the dipped kerbs are, where are the nearest parking spaces, can I push myself that distance or is it easier to uber? (No, I don’t do tubes and buses.)

Long before we had the internet and Google I used to carry a page ripped from Time Out in my purse, it was the page which listed the phone numbers of most of the bars and clubs in London, so if on a night out with friends I could masquerade party girl spontaneity by calling said bars or clubs in advance and give them a heads up that I was heading down in my chair. I decided to take this approach after so many occasions being turned away at the door for being a fire hazard, yep, seriously, people were smoking inside and their fire exits were probably all locked with a chain and padlock but I was the fire hazard. It was after too many nights of getting dressed up and rejected that I developed the ‘call first’ approach. The rejection and exclusion takes its toll, it is so much nicer to arrive at a bar, be greeted by a smiling bouncer who invites you to skip the queue and ushers you inside.

We all want to be welcomed, to be invited in, to be included. How would you feel to be excluded from your life as you know it?

If you had a life changing accident tomorrow would you be able to return to your home and your job, is your office accessible, could you get your own coffee in your favourite coffee bar, is it a flat entrance, could you get your own drink in your local bar. Would you be able to access all the local eateries to buy your own lunch near work? How many kerbs do you think you could manoeuvre your chair around, are you arms strong enough to life the weight of your body? Would you able to continue to date someone who lives on the 6th floor of a building with no elevator?

I’ve done such a great job of making it look easy that most of you have said at one time or another that you forget that I have a disability, I used to think of that as a good thing, a success on my part but now I see that maybe it’s not such a good thing, maybe it was misleading. At college, at university, at new jobs, I always work hard to put everyone else at ease, so they’ll relax around my disability and we can focus on building relationships and get on with the work. I’ve always loved the interaction with children when I visit schools to talk about disability, their honesty and innocent curiosity, it feels good to educate them about disability but I think I may have dropped the ball in educating adults honestly. I’m not looking for sympathy here I just think I owe to myself to speak the truth to honour my story and say that I have overcome a ‘massive thing’ sustained at a very young age, but in order to do that I have to admit it and accept that it was a huge trauma and damn it, it’s really f*cking hard to do. I’m hoping that in acknowledging it publicly it will help me adjust to a new way of thinking. No more minimising. As my mama always says, “own it.”

No more filtering…ok, maybe just a little.

Finding the Right Words

I had always intended to kick start my blog in January 2017, I had a plan for a redesign and a few articles lined up to publish, however instead of a piece enthusing or raging about something or other I’m writing a piece about the very sudden and unexpected death of my dad three days before Christmas. Typing those last few words is still so alien to me that it takes my breath away and makes me feel a little light headed.

I received the news on a phone call from my uncle on the afternoon of 22 December, I can remember the sensation as my blood ran cold and I sat in my car in disbelief, how was this possible? How? Not why, just how can such a huge presence no longer be. I had only been speaking to him and laughing on the phone the day before and I was due to meet him at the airport tomorrow. We were going to be spending Christmas in London together…how is this happening…

The following few hours were a hurried blur of contacting relatives and close friends to let them know before it broke on social media. I don’t think I’d ever had to manage Facebook in such surreal circumstances, asking a few people to take down their comments before I had the chance to draft a status update on behalf of our family, I recall someone even asked if I wanted to issue a press release but I dismissed that as an overreaction, I seriously underestimated the press interest in dad’s passing.

http://www.billboard.com/articles/news/obituary/7633110/frank-murray-the-pogues-manager-dies-66

http://www.hotpress.com/Frank-Murray/news/Pogues-Manager-and-Thin-Lizzy-Man-Frank-Murray-Dies/19408124.html

https://www.rte.ie/entertainment/2016/1222/840817-frank-murray/

I shan’t bore you with all the organisational considerations and preparation details but if anyone needs a hand arranging a very large funeral at short notice overseas between Christmas and New Year, give me a shout. In the words of another Irishman “I have a very particular set of skills.”

Dad’s service was spectacular and everything we could have asked for, and more. It was a very special, celebratory day and night and it couldn’t have happened without the help of a couple of brilliant people who provided support and sanity in the long days and dark nights. Thank you to all who came, to the brilliant musicians who played, to those who sent messages of love & support and to friends and family who watched online from all over the world. (Yes, a Catholic church live streaming a service online, crazy times people, crazy times.)

I had noticed a couple of photographers outside the church but was not at all prepared for the media interest the next morning. I was particularly taken aback to see much of my eulogy quoted in the press, not once had it crossed my mind that this might happen, if it had I might have put more time into it rather than scribbling it in the early hours for the morning before the service! Everything said about it has been lovely and I’ve been asked for copies of it by a number of people. Which brings me to the point of this post, I’ve decided to post the eulogy here for people to read. Not because I think it’s amazing and I want to give myself a pat on the back, quite the opposite, it’s very personal and quite hard to put out there but as much of it has already been quoted in the papers I’ve decided to publish it in full for those who have asked for a copy.

The thing with a eulogy is that unless the loved one was unwell you don’t have advance notice to prepare, it feels like the most important piece you’ll ever write but you have to turn it around in a couple of days/hours whilst in a state of shock, grief and a half a dozen other intense emotions. I put so much pressure on myself to recall stories, funny memories, personal moments, I wanted the eulogy to be about him as my dad, not the music manager; but slowly I realised I didn’t want to share the best stories, I wanted to keep them within our family and cherish them, it feels like holding him close. So ultimately I just trusted that when all was quiet something would come to me, and it did, between midnight and 2am the night before his service.

Someone once said to me that if you feel a strong urge to write something perhaps it’s because someone else really needs to read it; so my hope is that this may one day be of some comfort to someone else grieving a loved one.

http://www.irishtimes.com/news/ireland/irish-news/frank-murray-was-a-hugely-proud-irishman-full-of-culture-1.2924680

http://www.independent.ie/entertainment/music/music-news/funeral-tributes-flow-for-fearless-legend-of-music-industry-frank-murray-35340258.html

http://www.hotpress.com/Frank-Murray/news/Frank-Murray-A-Final-Farewell/19410337.html

http://www.thetimes.co.uk/article/frank-murray-dp5jrc9c5

http://www.independent.ie/irish-news/every-call-every-card-every-little-bit-of-love-is-always-deeply-appreciated-35349600.html

For Dad:

Firstly I’d like to thank you all again for being here, it means so much to see so many people who loved our dad. I know some of you have come from England, America and further, thank you so much. I have no doubt that most of you have brilliant stories of time spent with dad, and through those stories we can keep his memories alive. Some of the stories from the industry are already online for everyone to read (with slight embellishment) and I’m sure and I hope they’ll be retold by many of you for years to come. We are lucky to have so many amazing public tributes to him for us to read about this so called, legend, charmer, rogue, driving force, gent with old school Hollywood swagger (he’d have loved that one) but he was so much more than that. I want to tell you about the man behind the music. He was a son, brother, uncle, husband and to us he was dad.

He was incredibly intelligent and largely self taught, with a huge amount of street smarts and no fear of confrontation in any situation. Many of you who worked with him will know he wasn’t one to shy away from confrontation but that also manifested itself in other ways. I remember about a week after 9/11, we were at a petrol station and he went inside to pay, there was a bit of a queue, the cashier was new and needed a little extra time. 3 young men started having a go at her which lead to them verbally abusing her for being Asian and Muslim, whilst others in the queue stayed quiet dad shouted out and told them in no uncertain terms to shut up. As they and he walked back to their cars the shouting continued and I was really nervous for him, but he had no fear, he stood his ground and they drove away. What I’m trying to illustrate is that he always stood up what he believed was right and he made sure he instilled that in us from an early age.

His love for Dublin was immense, he was a hugely proud Irishman, full of culture, history and of course politics, God help you if you entered a political debate with him from an opposing point of view, though he loved it, especially if it was someone of equal intelligence, he thrived on those stimulating conversations and it always, generally concluded amiably. As many of you have said he was a gentleman.

He was a staunch defender of women’s rights, he invested in a women’s theatre group, Trouble & Strife, in the 80s that was telling the stories for women incarcerated in an Irish prison, and he raised me to have confidence in myself, to speak up, to believe there was no ceiling on my potential, I have never ever once in my life thought I couldn’t do something because I was a woman, he and mum made sure I was very independent – perhaps a little too much.

When I was 13 the Pogues were supporting Bob Dylan in New York and joined him on tour for a few days, on the final day he’d promised me one last trip to Bloomingdales, but he was a little the worse for wear and wasn’t able, so without telling him I hopped on the train from Gramercy Park, did my shopping and went back to the hotel. There was no way I could tell him, he’d have flipped that I went off around Manhattan on my own. A year later when I had my accident and he spent 3 days at my bedside, I figured it was the best time for a confessional, he laughed his head off and 25 years later retelling that story still tickled him. I think he liked that it should chutzpah at a young age.

We spent wonderful family holidays together, the States, the Canaries and an epic road trip across Ireland with the Dubliners and the Chieftans as our soundtrack. I realise for many of you here your memories of him are based in Dublin, or New York or Austin, but for my brothers and I the streets of London are where we grew up with him, Camden, Soho, Kilburn.

Mum and dad had known each other for 44 years, they started dating as teenagers in Dublin and even they were no longer together they were still best friends. Our last phone call was the day before he passed away, all 3 of us on speakerphone laughing and joking about our Christmas together. Mum wanted everyone to know how wonderful he was and though he is gone far too soon, she is happy of the time they had together and the 4 children they raised together, of whom they’re both very proud. As someone wrote to me last week, when they were at their peak they were the coolest couple in town.

Dad might be best known for music but he loved art and literature and I’m glad that he was able to pass that love on to us. He saw art in everything, he was forever looking up at the architecture of buildings, pointing out historical landmarks, telling the stories, he always had so much history to share. It would drive me crazy when he was driving he’d always be pointing out houses, streets, buildings for which he had stories, whilst I’d saying will you keep your eyes on the road! It became a running joke how many turnings he’d miss because he was pointing out the landmarks, he had a story for nearly every building in Dublin!

He was still so curious and passionate, some seem to lose their passion for life as they age but he still had so much more that he wanted to do. He had started writing a book and had sent us a few pages, I genuinely loved it and couldn’t wait to read more. He had such wonderful plans for 2017.

People have saying 2016 was a horrific year, and yes politically it was a shocker but on a personal level it wasn’t that bad for me until a few weeks ago, but while everyone else is skipping into 2017 I actually want to stay in 2016, putting it on pause with my dad still with me. I now have to get through 2017 and beyond without him and I don’t want to.

Tomorrow most of you will get on with your lives, but for us it’s a new beginning, it feels less bright, scary, the colours feel dull, there is less joy around and the future looks very distorted, everyone says time helps but right now there is an almighty deafening silence where his presence should be.

I can’t grasp how someone so full of love, huge amounts of energy and with such a massive zest for life be gone? There one day and then just gone, no warning. Who’ll give the huge tight bear hugs he used to give us, who’ll call me the silly nicknames only he used, who can I call to exchange silly tittle tattle, who’ll take my late night calls when I’m having a crisis of confidence about my career choices? Who’ll love me unconditionally when I’m being a nightmare? He was my rock, my sparring partner, my confidante, my guidance counsellor, my champion cheerleader, and I’ve only really realised in the past week that he was also my best friend. I have no idea how I’m going to live without him on speed dial.

To put it simply dad loved life, even when things were down he could see the positive, be it a stroll on the beach, looking at wildflowers, and spotting wild birds. He could always see the light in the darkest tunnels. Admittedly I used to get infuriated with his youthful optimistic outlook sometimes when I was stressed out and worrying, I’d call him Peter Pan. Always optimistic and playful with a penchant for mischief, he occasionally embraced his inner child and I see now that I need to take that lesson on board. His last Christmas present to me which I received a few days after he passed was a beautiful sketch from a scene in Peter Pan.

There are no words that adequately describe the magnitude of a loss as huge as dad. He lit up every corner of every room he entered, he was ever the raconteur with people gathered around him. He had the best stories, he always ended up in the craziest situations, only last month he met some of the Dubs GAA team on a flight to New York and he got to hold the Sam Maguire cup, he was so overjoyed, he sent me a text telling me he felt like a big kid. I’m so, so glad he had that experience.

Anyway, we all know he is joining the great rock n roll roll call of 2016, he’d have loved getting his name down on that guest list, last minute as always, just before the doors close and as many of you have said, that many awesome musicians need an awesome manager to keep things under control. I hope wherever he is that he is happy and laughing that big broad laugh of his, gathering more stories to tell us all some day. I saw a dedication at the end of a film last week referring to someone as a great storyteller and a purveyor of dreams, I’m going to borrow that dedication for dad today, it seems to say it all that needs to be said about him. Thank you.

 

LA Podcast Action

Despite being more disabled than usual (a paraplegic with a broken leg sounds like the start of a bad joke) I’ve managed to get my arse in gear and contribute to two brilliant  podcasts in the past few weeks.

I join in with the Abnormally Funny People crew once a month to give a little update on life in LA. They’re currently kicking ass at the Edinburgh Fringe so grab a ticket if you’re in town. Read more about them here: http://www.abnormallyfunnypeople.com and you can listen to the latest podcast here: https://audioboom.com/boos/3424767-afp-show-13-show-13-lucky-for-everyone

Also this month I joined BBC Ouch when I stepped in as wing woman to presenter Kate Monaghan on their August show recorded here in LA. We were joined by some pretty cool guests, hip hop dancer and star of reality show Push Girls, Auti Angel, talent agent Gail Williams and actor RJ Mitte, (better known to some as Walt Jnr from Breaking Bad). All of us work in the entertainment industry so we talked at length about roles for disabled actors and representation of disabled people in both the UK and US industries.

RJ is in a unique and enviable position, an actor with a disability who has worked on an immensely successful and well written show which has provided an excellent springboard to other high profile opportunities. (He recently walked the runway for Vivienne Westwood at Milan Fashion Week.) One of the reasons I’ve campaigned for better representation of disability in the media is because I believe there is a direct correlation between how disability is portrayed on screen or in print and how disabled people are treated in society. Films, television and books tell stories, sometimes informative and sometimes entertaining but too frequently those stories don’t include disability, they effectively censor disabled people and our experience. It’s pretty frustrating to feel that your experience isn’t worthy of representation other than as an alien cell structure under the microscope of a reality show. That’s why it’s important that performers like RJ and Auti are given the same opportunities as able bodied counterparts, the chance to tell our stories and reach a larger audience.

It raised some great discussion points and I had a blast, I think I was hyper excited to be out of my apartment and hanging out with a large group of inspiring people discussing topics I’m pretty passionate about, (I may have been going slightly stir crazy spending so much time in my apartment, my broken leg is somewhat curtailing my social activities) I left the studio feeling fired up and ready to put some plans into action.

Here’s the link to the BBC Ouch podcast: http://bbc.in/1NKGxe3

BBC Ouch Podcast Crew

A Very Personal Silver Anniversary

Today, August 5 2015 is 25 years since my accident which left me paralysed. Paralysed but very much alive and pushing forward. My silver anniversary if you will. (All silver gifts welcome)

I usually try to do something decadent or indulgent on this day, I think surviving a life changing accident is worth celebrating, the alternative is pretty bleak. I had such grand plans in my head for the big 2-5, perhaps a city break, a spa weekend, (or treat myself by replacing the beautiful & expensive watch my dad bought me when I was discharged from hospital after 10 months in spinal rehab).

Clearly life had other plans for me, and they seem to include some serious déjà vu. Once again I’m laid up recovering from a serious fracture. This time it’s my leg, both tib and fib. There are few other odd similarities too, both accidents happened in countries far away from home, both at the height of summer, both occurred just before really good things were going to happen.

What lessons should I take from this? Don’t leave home especially during the summer and don’t welcome good gigs and exciting plans?! Live in a bubble wrapped igloo away from sunshine forever? Well, that’s no way to live life so that’s not gonna happen.

It strikes me as a little harsh that on the 25th anniversary of my accident I’m currently laid up recuperating from the only other major bone fracture in my life. Why couldn’t this have happened last year in winter when I had a job with sick pay, the technology to work from home and would have loved hibernating inside away from the cold. (I also would have been under the care of the NHS, don’t knock it till you’ve needed help without it.)

It’s a very frustrating time but I know all I can do is ride it out, past experience from my original accident gives me that delightful insight. I didn’t intend to spend 3 – 4 months of my time in LA laid up with a broken leg, though I appreciate there are worse places to be recuperating. As each day passes I’ll slowly reach that light that glistens as the end of a long dark tunnel. I’ve commented to a few people that this period of recovery is much tougher than when I broke my neck, even though I was facing the prospect of using a wheelchair for the rest of my life; anything still seemed possible. But I’m older now and I have different worries, rather than worrying about what clothes I could wear in a wheelchair without getting pressure marks, where I was going to attend school and if a boy would ever want to kiss me, instead I’m now worrying about rent, medical bills and when my leg will heal well enough for me to work. (If any of you have a job for someone working from home, holla!)

That’s not to say vanity has not played its own role this time around, the surgery to pin my leg has left a pretty big scar down the front of my leg, the tiny amount of muscle tissue I did have has atrophied totally which I find really upsetting and I cringe when I can feel the unnatural bumps caused by the metalwork in my leg. It’s left me feeling pretty gutted, don’t worry I’m aware how shallow and vain that sounds.

The thing is it took me a very long time to get used to the differences in my body after I became paralysed; it was months before I touched my legs and properly got to know them again through washing and moisturising. It takes a lot of work to get comfortable in your own skin when it is both familiar and alien to you. I leaned to love them and they became one of my favourite features, I loved how long and perfect they were, despite the fact they didn’t move and were fuck all use for walking, running, cycling or can – canning. I loved them regardless of their imperfections. And here I am 25 years later trying to do it again, it almost feels like I’m grieving their loss again, they seem so vulnerable and in need of protection by me. It’s 10 weeks post surgery and I’m still only tentatively massaging oil into my leg. I still squeal and flinch when I can feel the plate and pins beneath my skin, it’s not natural and the sensation freaks me out and despite reassurance from my surgeon I’m scared I’ll dislodge something; I’m sure I’ll get used to it eventually, we humans are adaptable muthaf*ckas (and none more so than those of us with a disability, we frequently have to adapt for the able bodied environment in which we live.).

So what else can I do but get on with it, roll with the Groundhog Days, accept that time will pass and my leg will heal and I’ll adapt to the differences, and obviously I’ll bore you all with blog posts about it all.

I saw this picture on Instagram a few days ago and unsurprisingly it spoke to me, (for those of you who don’t know, I broke my neck in a diving accident). I think it’s beautiful, for me it captures the brief moment of serenity and calm when diving mid air before hitting the water; for me my own last dive is very much suspended, those few seconds forever replay in my mind slow motion. The picture is by Miranda Lorikeet and is called ‘Dive / Survive’, (that title couldn’t be more poignant to me right now).

‘Dive / Survive’ by Miranda Lorikeet

Leap of Faith

When I told friends my plan to move away to California for a while a few of them said I should keep a video diary and upload weekly updates to let them know how I was getting on. The idea of talking about myself to little green light made me cringe so badly that they’ve had to make do with Skype and FaceTime, but I did keep a weekly journal so I could look back and see how many challenges I’ve faced and hurdles I’ve overcome – as well as all the fun stuff that comes with moving to a new country. It’s 6 months to the day since I left London so it seemed the perfect time to take a little look back….

I’ve got to be honest, that last week in London was agony. Though it was late January, London has never seemed more beautiful and I’ve never loved it more (despite being totally frustrated by it in the preceding 4 years). I spent most of January catching up with dear friends, hanging out with family and snuggling with my beloved dog; why the hell would I want to leave all this?? I had to keep reminding myself that that place in time was a bit of an augmented reality, I wasn’t working so my days were free to indulge in whatever I wanted, my friends and I weren’t bailing on lunches or dinners because we knew it would be a long while before we could hang out again.

Everyone around me was so excited for me, but I was frozen in a state of sheer terror; a fist of nausea held my stomach in a tight knot and I seriously questioned the sanity of my decision. What the fuck was I thinking, leaving work, friends and family to move to the other side of the world? Thankfully my friends and family were amazing, especially my mum, practically kicking me out the door as I wailed like a banshee.

So why was I doing it? I’ve spent quite a few holidays in the US and always felt a pull to live here at some point, but this was particularly heightened after my accident, the wheelchair access is light years ahead of the UK and I can’t deny the appeal of dropped kerbs, lifts & ramps everywhere, huge accessible bathrooms and 250+ days of sunshine per year.

I felt a need to make some changes in my life, my friends were largely all settling down with partners and children or thriving in incredibly successful careers and I felt stuck and stagnant. It was like I was stuck in thick mud and couldn’t move forward, I felt suffocated; I had just come to the end of years of studying and training to qualify as a solicitor and I finally had an open road in front of me, one on which I could navigate the direction.

It seemed like the right time to make the move, I’m fortunate to have the requisite visa so there was nothing holding me back, other than myself and my good friends fear and self loathing. The certainty I had felt a year previous had vanished, in the last 3 months before I left I was like a baby trying to cling to the safety of her mother’s womb; without the support and encouragement of my family I’m sure I would have bottled it.

So, here I am, 6 months later in my apartment, it’s 95 degrees outside and I can see palm trees and the top of Mulholland Drive from my window. Any regrets? Only that I didn’t let myself enjoy the moments before I left, in those last few weeks I wish I could have felt the excitement that my friends were feeling for me, all I felt was terror, I kept expecting to see Edvard Munch’s ‘The Scream’ reflecting back at me in the mirror.

There have been a few bumps in the road since then, not least the one that has me recuperating from surgery, more on that in a future post, but I’ve definitely started on the adventure I was seeking. Admittedly it’s not quite as care free as I had imagined in my head, turns out no matter how far you move, you do still bring a certain amount of baggage with you.

Me with my baggage.

Back to Blog

Woah, my last blog post was in November 2012, I knew it had been a while but I didn’t realise it had been quite that long.

Two years and five months… quite a lot has been going on which is why the blog has lain dormant for so long. I don’t know if anyone will read this or even be interested in the whys but it seems right to re enter the blogosphere with a somewhat vague explanation for my extended absence.

At the beginning of 2013 I received some upsetting news about a loved one, someone I adore and cherish beyond words. It was the most breathtaking pain, the kind where you feel like your heart has been ripped out of your chest and replaced with a dark, yawning chasm; a silent empty hole where you heart used to thrive. I wanted to yell and scream and cry for days; it was a pretty shit time, going to sleep each night and waking each morning with the same dark heavy fog in my head.

Then ever so slowly, with time and the love of family and friends, the pain eased and I felt myself returning, a reassuring warmth replacing the icy cold fear, my heart coming back into being, but not quite as before, it was as if it has been hammered by a meat tenderiser; battered, bruised and raw.

For a long time it was too painful to write, to think about it, to go there. So I didn’t, I threw myself into work, fortunately it was during an intense period of my training contract so my workload increased and provided the perfect opportunity to hide away in work. I enjoyed the longer hours and the sanctuary of the corporate bubble but deep down I knew I wasn’t giving myself the space and time to feel and think. Unsurprisingly my own health suffered and resulted in a scare which required surgery last year (that’s a topic for a future blog post).

I don’t always find it easy to write and hit publish, especially something as deeply personal as this, despite what my social media presence might indicate I’m a pretty private person. I tend to write something, attempt to edit it, debate whether or not to make it public then hit publish, slam the laptop shut and run away for a few hours. Mature and rational behaviour, eh?

So all in all the past few years have been a bit bumpy and I had no inclination to blog and bleat about it. I’m also fairly sure no one would have wanted to read the highly charged outpourings of grief, fear and self pity that were consuming my thoughts. Even this blog post feels ridiculously self indulgent, especially given that I’m in a much happier place now.

However, in those harsh times we tend to re evaluate who and what our priorities are, what makes us happy, recognising true friends and appreciating how quickly time flies past us.  So I completed my training contract and qualified as a solicitor then decided to take a year out for adventures, I left London and moved to California, land of kale juice, Starbucks drive thrus and sunshine; after a couple of years of darkness I really needed more light in my life. (Sorry if I’ve gone too new age there, I blame LA.)

Much like a polar bear emerging from a long winter of hibernation I’m still finding my way out here, foraging for the best raw fish, scoping out the hottest spots for lounging in the sun and travelling the shortest distances to the best cocktails by the pool.

I saw the red wall pictured below on a street in Santa Monica, it seemed very apt.

This blog is back!

SM

“Anything can happen. Anything can be.”

Rust and Bone

I went to a screening earlier this week of one of the most beautiful and brutal films I’ve ever had the pleasure to watch; ‘Rust & Bone’ is a compelling and complicated love story exploring issues of friendship, romance, sexuality, poverty and disability.

It is a tense film to sit through, there were moments so raw and visceral that I had to peek from behind my fingers, though couldn’t actually look away totally; I didn’t want to miss a single frame of the direction by Jacques Audiard. I don’t want to ruin the story by divulging too much of the plot but it’s no secret that killer whale trainer, Stephanie, (Marion Cotillard), is injured in an accident that leaves her with a physical disability. The film revolves around her budding friendship with the chivalrous troubled loner, Ali, (Matthias Schoenaerts) and their complex, contrasting lives.

When watching films featuring disability, especially wheelchair users, I’m always torn between wanting to watch the film as an audience member and wanting to assess the accuracy of the actor’s portrayal of the physicality and the emotions captured in the scriptwriting. (As an actress there is also always a part of me considering what I might have done differently in the same role).

In my opinion Marion Cotillard gives the best performance of a wheelchair user I’ve ever seen; admittedly I don’t know the reality of the specifics of Stephanie’s particular injury so can’t comment on how realistic the physical rehab was, but her portrayal of a wheelchair user is simply incredible. She struggles initially with the alien and cumbersome metal frame, finding it difficult to negotiate around rooms the way most of us do post injury; but later she develops the natural affinity so that using the chair becomes effortless and graceful. Cotillard moves the wheelchair so fluidly, it becomes an extension of her body, it is the chair that provides her the independence and freedom to escape her apartment and move on with her life. The scenes where she isn’t in the chair are pretty spectacular too, she isn’t scared by her altered body, she tentatively embraces it and looks to move forward in a different direction; it was great to finally see a disabled woman having a decent sex scene too!

On a very personal note there were moments captured on screen that resonated so deeply with me they triggered an instant freefall of tears down my face; emotions I’ve kept private and never shared with anyone else were depicted on screen so accurately yet so subtly. I’m in awe of the scriptwriting, the directing and of course Ms Cotillard….she rocks the chair well.

Rust & Bone is a truly amazing film and I urge you to go and see it.

Check out the official trailer here:

http://www.youtube.com/watch?v=1u74RX6o-8I&feature=youtu.be

On general release from Friday 2 November 2012.

Newsnight

Last Wednesday (29.08.12) I was a guest on Newsnight on BBC2 along with Francesca Martinez, Ann Wild and Mark Littlewood discussing the Paralympics and their potential to change the perception of disabiity in society, and also the impact of welfare reforms on the current recepients of DLA and other disability related benefits.

3 days left to catch up on iPlayer:

http://www.bbc.co.uk/iplayer/episode/b01mfjm9/Newsnight_29_08_2012/

The Paralympics and Me

Here’s a link to a new blog post on The Independent website, it’s about my feelings towards the Paralympics and how much my attitude has changed in the past six months.

http://blogs.independent.co.uk/2012/08/28/at-first-i-didn’t-want-to-be-defined-by-my-paralysis-and-now-im-proud/