Friday, 19 January 2018

15 Things Not To Say To Disabled People Pt.2

Last year I wrote a post titled '15 things not to say to disabled people' that ended up being the 6th most popular post on my whole blog. I never expected the reaction it got or how many people could relate to what I said and so of course my immediate reaction was; I have to do a part 2! All 15 points for part 2 have been sitting in my drafts for about 6 months now and I think it's finally time that I put it all together and posted it! So, here are 15 more things not to say to disabled people.

*these are mainly points written by myself so of course not every disabled person will agree with them and also I have a physical/mobility disability so these points reflect that, keep that in mind.

1. If you just keep believing, keep having a positive attitude then you'll get better!

Our mind's are capable of amazing things but I can guarantee you that having a positive attitude will not alter my genes and reverse my incurable condition.

2. It must be so fun getting to skip queue's all the time.

Firstly, disabled people don't get to skip queue's as much as you think, especially people with invisible disabilities. Secondly, all the issues we face in life are not worth the queue's we get to skip, believe me.

3. But aren't you on pain relief? How can you still be in pain?

I have tried a lot of pain relief in the past 5 years and none of them have ever totally relieved my pain. For most of us pain relief is there to give us a small level of comfort, it rarely relieves all pain.

4. But you were fine yesterday?

Every day is different, even conditions that people assume to be quite stable can produce totally different symptoms on one day compared to the next. My pain can be 10/10 one day and 3/10 the next. I can walk inside my home without crutches one day and then have to use them the next.

5. My friend is a wheelchair user too, you must know them!

Believe it or not, not all wheelchair users know each other or are friends!

6. I'm so sorry that you're disabled.

Why are you sorry? I've done things that others my age will never do, it's given me opportunities I never could have imagined I'd get.

7. It must be so fun getting to stay at home all day.

Oh yeah, Jeremy Kyle repeats and silence are my favourite kind of day. Being off work/school sick for a few days might be a welcome break but when that becomes weeks, and then months, and even years, the novelty wears off.

8. Using a wheelchair will only make you worse.

Wheelchair's give people freedom, it gives them opportunities and open's up doors that might have been previously closed. We need to stop viewing wheelchair's as bad things, as an enemy. I'd be totally housebound without my powerchair, it's given me back my life.

9. Things are worse for someone who is only sick 'part time', you're sick all the time so you're used to it! - @endohope 

That's really not how it works. All health problems are difficult to deal with, whether it's for 6 weeks or 6 years. 

10. There's always someone worse off, just remember that.

That's like saying to someone 'there's someone happier than you so don't be happy'. 

11. Will you die? - @buggalugs

This is such a blunt and insensitive question, unless you know the person well, understand their health personally and the question is appropriate for the conversation, do not ask this. 

12. But you already went to the toilet 5 minutes ago? - @DolledUpLondon

Disability and illness cause symptoms, do not be surprised when people have to act on problems that their condition causes, and certainly do not question it.

13. It's only a word/joke (in response to an offensive word or joke referring to disability)

If a disabled person tells you that something you have said is offensive/ableist then take their word for it, non-disabled people do not get to decide what we find offensive.

14. Oh, you aren't using your *insert mobility device/daily living aid*, you must be getting better!

The lack of a mobility device or daily living aid doesn't necessarily mean someone is getting better, most of the time it just means that their likely variable condition is temporarily better that today, tomorrow could be quite different and they could be back to using the equipment. Do not make assumptions.

15. You're so brave.

Now, this is going to be a personal one. Some people don't mind being called brave. A lot of us don't like it though, I recommend you read this Metro article which includes lots of different reasons and opinions about why some of us don't like being called brave, a quote from me is included.

What else do you dislike people saying to you, as disabled person?

Wednesday, 17 January 2018

In Conversation with Actress & Disability Campaigner Sam Renke

Last year I started interviewing people connected to disability, whether that be through their job or being disabled themselves, as I wanted to give you a wider view and representation of disability. I am only one person, with just one experience so I hope that I can give you a wide range of opinions and experiences by posting these interviews. Last year I interviewed disabled actress Storme Toolis and Parallel London founder Andrew Douglass, and today I'm kicking off 2018 by talking to teacher turned disabled actress and disability campaigner, Sam Renke. You may recognise Sam from one of 3 Malteasers adverts that featured disabled people, Storme was also in one of them. Sam is not only an actress though, she is also a prominent disability campaigner and regular writes for Huffington Post and has a column in PosAbility Magazine, she's also a Parallel London ambassador. I recently talked to her about her disability, her acting career and the everyday difficulties she faces as a disabled person.

In Conversation with Sam Renke

Can you tell us a little bit about what Osteogenesis Imperfecta is and how it affects you?

Osteogenesis Imperfecta (OI), or more commonly known as Brittle Bones, is a genetic condition which affects around 15,000 people within the UK. I have type 3 OI and although it's a genetic condition, none of my relatives have it. Type 3 is a different mutation (I hate that word but it best describes type 3). Basically, OI means that I don't have type 2 collagen in my body. Collagen is found in your skin, hair, teeth and most significantly in your bones. I've had almost 200 fractures in my lifetime, even fractures in my Mum's womb. I already knew I was an overachiever. My fractures could occur up to 3 times a week as an infant and my Mum carried me on a pillow (again prima donna and overachiever, no wonder I became an actress).

My fractures have decreased as I've gotten older and my bones have strengthened from muscle increase and also puberty, thank god for those awkward teen hormones. My fractures are very sporadic, for example I've sneezed and cracked a rib, however I've been thrown from my wheelchair and come away with just a graze. I'm still very cautious and as I've gotten older I most certainly take better care of my wellbeing, however I don't wake up each morning and think 'oh today I may have a fracture'. I think if I had that attitude my body would become a prison and I love life far too much to let that take over.

I have a short stature and come just under 4ft tall, this is due to two things. When my bones were supposed to be growing they were in fact breaking and this stunted the growth. Secondly I had severe Scoliosis (curvature of the spine). It was so bad that I had life changing spinal surgery in 2006 to put metal rods in my back and stop my spine from squashing my heart and lungs. Both my legs have metal rods in too so you could call me bionic woman. I'm also prone to hearing loss, aneurysm's and have chronic fatigue. I am a full time wheelchair user, since my spinal operation due to complications I can no longer walk. I live independently in central London and I love my little flat. I absolutely love living on my own as it really makes me think outside of the box as there is no one to help me. I think this really helps me to be the creative person I am.

Find out more about OI on the Brittle Bone Society website.

How did you get into acting and what difficulties have you faced in the industry?

I've always loved acting, me and my older sister Stephanie have always been extroverts. Stephanie was always in school plays and I suppose emulated her. Drama was my favourite subject at school and it was a great form of escapism. It built my confidence which really helped me overcome any hangups I had growing up with a disability. I attended a number of drama groups after school however my dreams were squashed somewhat by my drama teacher who pulled me aside one day and told me that my chances of successfully becoming an actress when disabled were slim to none, like most other minorities. In a way this was true at the time as diversity in media almost 16 years ago was non-existent.

Her words really impacted me and although I still dreamed of becoming an actress or working in television, I actually went in a different direction and became a language teacher. I think teaching languages was the next best thing to being an actress and it was a performance of a class. I used to sing, dance, use puppets and sing language in my classes. In 2012 I took the brave, or somewhat silly decision, to quit my job as a teacher and move 200 miles south to London. It was at a housewarming party that I befriended a number of people in the industry and most importantly Max Barber, the director and producer of my first feature film. Max approached me at the party and asked me if I had ever done any acting and through our conversation we came up with a concept for a film and the rest is history. The film Little Devil won best film at the LA diversity film festival and I won best actress. To my knowledge I became the first disabled actress to win an award for their debut acting role.

I suppose the biggest challenge has been the industry seeing disabled people as 'good enough' actors and actually writing roles for us. Stereotypes are also a big issue. I refuse to play a role that victimises someone with a disability or has them as weak and vulnerable. I don't go on half as many auditions as I'd like or should be going to. Obstacles I've encountered on set such as accommodating my needs, whether that being bringing a PA with me or having a disabled toilet have been quickly resolved, it's all about communicating. This is why it baffles me why there still seems to be an issue with having disabled actors, we really aren't that problematic and will soon let you know if things aren't done accordingly.

X-ray of spine after spinal fusion with metal rods

What difficulties have you faced in everyday life as a disabled person?

The best piece of advice I've ever been given is this; the world doesn't owe you anything and once you start to think like this, no matter how harsh it sounds, your life becomes much clearer and much more manageable. Let's face it, having a disability is hard work at times and people aren't always compassionate, emphatic or helpful towards disabled people. People are selfish, that's the reality. Now, don't get me wrong, I'm all for campaigning to make the world a better place, I fight for injustice, but I don't spend time feeling annoyed about people not paying attention to my needs straight away. I am proactive and if I want my life to be better and fulfilled, I don't wait for others to make changes. I go out and change it myself.

So, in answer to your question, I face many challenges on a daily basis but it's up to me how much I let them affect me. I determine whether or not these difficulties bring me down or simply give me a challenge to conquer. I have my down days and I hate the world from time to time, however, I won't let societies ignorance impact on my wellbeing.

What changes do you think need to be made to make disabled people's lives more equal?

There are so many things but ultimately it comes down to people's attitudes towards disabilities. I am constantly underestimated in every aspect of my life. People think I can't have sex, have a baby, go to nightclub, have a job etc. This is why it's so vital to have authentic portrayals of disabled people on TV and within the media in general. Inclusion is the key.

Thank you so much to Sam for speaking to me! I think what she said about her dreams of acting really show how important it is that the people do not discourage others from going for their dreams, simply because of their gender, disability, race etc. Sam has become a talented actress, and campaigner for disability rights, and I hope to see her on our TV screens more!  

Sunday, 14 January 2018

The Life Update I Didn't Think I'd Be Writing

I'm not entirely sure how to start this post, being speechless seems to have been a common theme this week as the most surprising of events have unfolded. If you follow me on social media then I imagine you probably have some idea of what I got myself involved in this week but in case you don't, let's start at the very beginning.

The Life Update I Didn't Think I'd Be Writing

On Wednesday I saw a tweet shaming an M&S food product called 'cauliflower steak', which to you and me is sliced cauliflower. People weren't happy about cauliflower, a food item you can buy without packaging, being wrapped up in so much plastic and for more money than a whole cauliflower. Now, that's okay. We should be cutting down on plastic usage and these kinds of pre-cut products (especially ones created to cash in on January heath trends) are expensive but what followed was not okay. Suddenly my feed was full of ableism, full of tweets saying 'just buy a cauliflower yourself and cut it up, simple'. Simple to you perhaps, but for a disabled person it's often not that simple. I physically cannot cut up a cauliflower due to my disability so sliced cauliflower is perfect for me to stay independent. This was a really accessible product that got removed because of a knee-jerk reaction that didn't consider disabled people (as well as elderly people, busy parents, single people etc.).

The conversations surrounding it should have been about finding alternative packaging (recyclable or biodegradable) and lowering prices but instead the conversations were ableist and shamed people who bought prepared and packaged food, the conversation became more general and the Huffington Post UK posted what I can only describe to be one of the most ableist responses out there. They reeled off a list of prepared food items, everything from diced onions to butternut squash slices, and proceeded to shame anyone and everyone who uses them. A website that has been so supportive of disabled people completely disregarded our needs and shamed us for wanting independence. I won't link to it, as firstly I don't want to give them the views and secondly, after days of waiting they have made some slight (and these are ever so slight) changes to the piece, they toned down the ableism a little.

Metro Lifestyle, Channel 4 News, BBC Radio 2

By this point I was pretty fired up and I took to Twitter myself to try and inform people about how many disabled people rely on these accessible products that were being labelled as lazy and pointless. Well, it's been 4 days since that and right now one of my tweets about it has racked up nearly 1,000 retweets, not properly viral but people were listening. Since then I've written for Metro about it, had that very article mentioned on Graham Norton's BBC Radio 2 show on Saturday and on Friday Channel 4 News came round and filmed me for a piece about it for social media. That ended up being on the evening news on Saturday. I've also got interviews lined up for next week and posts to write for websites about the issue. And I'm not quite sure how it's all happened! None of it has sunk in yet.

This week has been a bit of a blur and I've been running on adrenaline for most of it, luckily I've been able to do most of the tweeting, writing etc from the comfort of my bed but I'm definitely expecting to crash after it all calms down. I don't intend on letting this conversation quieten down if I can help it though, I want to keep this going for as long as possible because you can guarantee we'll be back here again the next time someone finds an accessible prepared, packaged product that seems pointless to them. The truth is that many disabled people, myself included, would be relying on mostly unhealthy ready meals if we didn't have access to these products. The solution is to find alternative packaging, not to remove these products. That's the message I've been trying to get out there.

I have to say I've really enjoyed using my voice this week to shine a light on this issue, I've most definitely caught the activism bug. I remember the first time I did a radio piece, I was so nervous I had a panic attack and now look at me. On the TV, pitching to radio stations myself and popping up on social media more times than I can count. It feels amazing for people to finally be listening to what disabled people have to say. And for once I can confidently say that I'm proud of myself.
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