I'm a disability, lifestyle and beauty blogger trying to raise awareness of Marfan Syndrome and dispelling disability myths and stereotypes.
I'm a disability, lifestyle and beauty blogger trying to raise awareness of Marfan Syndrome and dispelling disability myths and stereotypes.
When it comes to wheelchairs, and mobility aids in general, it’s fair to say that the conversation can often be negative, particularly when led by non-disabled people. Once upon a time I shared the view that being in a wheelchair was one of the worse things that could happen to a person, I felt sorry for wheelchair users that passed me in the street. That’s internalised ableism for you.
As my health declined, and I found myself relying on mobility aids more myself, I began to see the other side of the coin. As many people with deteriorating conditions do, I fought using a wheelchair. I struggled on crutches for a long time before looking into using a wheelchair because society led me to believe that using a wheelchair was bad and a sign of giving up. Slowly though I started using a manual wheelchair for long distances, shopping trips etc and found myself wondering why I’d viewed this mobility aid so negatively. It was changing my life, allowing me to spend time with family and enjoy a life outside my home. Since then I’ve gone on to use a powerchair which has changed my life beyond what I had hoped.
Last year though my needs changed and my old powerchair was beginning to limit me. Through lack of NHS help I found myself having to fundraise to get a powerchair that would fit my needs and give me the best quality of life possible. Many of you supported me in this, sharing my GoFundMe link and donating what you could. At the start of the fundraising I was sure it would take potentially a whole year to raise the funds, over £10,000, but the whole process from start, to me receiving the new powerchair, was barely 6 months. I’ve now had my new powerchair for nearly a month and it still hasn’t sunk in. I wonder if it ever will.
What I do know though is that my life has already changed for the better. I’m able to spend time with family without worrying about getting home to lie down to relieve my chronic pain. I’m able to accept more invitations to speak at events and within the media about the disability activism I’m so passionate about. I’m able to start living like a 20 year old again. I’m independent and in control of my life now, instead of my chronic pain dictating when and for how long I can go out.
I’ve already made some amazing memories, including finally being able to take my Mum to see Les Miserables in London recently. She’s wanted to go for as long as I can remember, and I’ve always promised I’d take her but it wasn’t possible with my old powerchair. So, when I got the estimated delivery date for my new powerchair I booked us tickets and we went last month. She cried from start to finish and I am so grateful that through the kindness of strangers I’ve been able to make precious memories like that.
The small things are just as important though. My powerchair has a rise function that lifts me up 10 inches, putting me at eye level with people standing, I can even drive at 3mph like that! Socially it has endless benefits, people actually walk into me because they don’t look down and I’m forever getting neck ache from looking up at everyone. It also enables me to be more independent though as now I can reach high shelves in shops with ease and no longer have to leave a restaurant or bar because the only available seats are bar height. Powerchairs aren’t just about getting from A to B, it’s about quality of life, independence and having all the tools to live your best life.
I’m so excited to see where this year takes me now I have a powerchair that fits my needs and my body. So many doors are already opening!
Images by Fordtography: http://www.
2017 was the year that brands and companies finally made a start on improving diversity in their campaigns and representing minorities but, as I’ve talked about on my own blog before, there is more often than not one minority that gets left out of the conversation. We were missed out of The Oscars diversity conversations, forgotten about in supposedly diverse fashion campaigns and generally missed off the diversity list time and time again. Disabled people are forgotten about all too often and this is especially true when it comes to the fashion and beauty industry.
Whilst things are slowly getting better we definitely aren’t heading in the right direction as quickly as we should be, so modelling agency Zebedee Management decided to take things into their own hands and shoot a swimwear campaign named Everybody Beautiful and the best thing? All the models are disabled. And it isn’t just made up of wheelchair users and visibly disabled people, they’ve covered a wide range of disabilities including invisible ones and learning disabilities.
This isn’t a one off box ticking exercise either, as Zebedee are an agency dedicated to representing disabled people. They have led their disabled models to work on huge campaigns with brands like River Island and others have walked at London Fashion Week; they are the diversity boost this industry desperately needs. The agency was founded by Laura Johnson and Zoe Proctor after they noticed that disabled people were not being fairly represented in the media, and they are ideal for the job with both having experience in the modelling industry, as well as Laura being a social worker and Zoe being a performing arts teacher for people with learning disabilities. They are dedicated to being diverse in all areas too with their models ranging in age, size and ethnicity.
We still have a long way to go but campaign’s like this from Zebedee are starting conversations, breaking down myths and taboos and opening doors for disabled models. I’ve never been too confident in front of a camera but seeing the images from Everybody Beautiful ignited something within me and suddenly I wanted to be there, taking part. That’s what representation does, it creates opportunities and shows people their potential. Hopefully the success of their models will encourage other agencies to take on disabled models in the future because everyone benefits when people are better represented.
As I’ve grown older Christmas, for me, has become less about presents and more about enjoying time together with family and loved ones. Over the past couple of years I’ve started to make small changes when it comes to Christmas, for example this year I’m doing away with Christmas cards that just get chucked in the bin and instead I’m donating £5 to a charity, where I know the funds will go to a lot more good. Christmas is all about celebration but it’s also a time to think of others, to be selfless and make sure that everyone is enjoying the festivities. Perhaps you’ve got plenty of free time and can volunteer at a homeless shelter or perhaps you just want to do something quick like an online donation, whatever it is it’s all valid and important. Today I thought I’d round up a few charities, places and people that could use some support this Christmas for those that want to help, but are unsure how to.
If you can spare £26.08 this Christmas then you can reserve a place at Crisis for a homeless person in need. Your donation will get them a Christmas dinner, advice on housing, employment, benefits and more, healthcare including dental treatment, hairdressing and massage treatments, learning and skills opportunities and more. That’s a lot for your money. I really like campaign’s like this as you can see exactly where your money is going and it breaks it down so you know you are helping someone in need, it’s incredible looking on the website and seeing how many people have bought multiple places! If you want to make a direct difference this Christmas then this might be the right charity for you.
Foodbanks are vital source of food, and other items such as toiletries, for people in need of urgent help and they are being used by a record number of people now. There will be families all across the country this month left with no money to pay the bills, let alone enough to make a Christmas dinner or exchange gifts, thanks to long waiting times for Universal Credit (a new benefit system put in place by the government). The Trussell Trust lists all the ways you can help on their website, including donating food, clothes, and even your time, or perhaps just a one off donation. Find your nearest foodbank here.
Donate directly to individuals
Often when you donate to charities it can feel like your donation doesn’t make much difference, and sometimes you have no idea what your donation is actually funding but when you donate directly to an individual’s GoFundMe page or fundraiser you’ll be able to see the impact it has first hand. I’ve just recently fundraised for a specialised powerchair. I’m mostly housebound right now and life is standing still but this new power chair will give me back my life. As soon as I have the power chair I will start benefiting greatly and the people who have donated will be able to witness the effect their donation has had on my life. When it comes to crowdfunding it’s the small donations that add up and make the biggest difference so consider sparing £5 here and there this month, if you can, to put a smile on people’s faces.
Small ways to help:
I’m Shona – you probably know me from my disability posts on SMB – and I need your help. None of us like asking for help but sometimes it’s necessary and right now if I don’t ask, I will become housebound.
I have a condition called Marfan Syndrome that affects my whole body, everything from my heart to my skeleton and in the space of 4 years I’ve had 3 major surgeries, including a hip replacement at the age of 18 and there are many more surgeries ahead. The biggest issue is that my condition has caused me to develop a large cyst at the bottom of my spine that is eroding away bone and every time I sit up, even if it’s just for a few minutes, I get severe chronic lower back pain that has left me only able to walk a few steps on crutches, so I rely on a powerchair to get around. My current powerchair is basic though, it’s basically a car seat on wheels. It’s seat is uncomfortable and it has none of the functions or support that I now require, it can’t be adapted either. My health has declined so quickly in the past year that it become unsuitable quicker than expected and now I’m left needing something far more specialised.
NHS wheelchair services, a system that is supposed to help disabled people, have strict rules though, because I can walk a few painful steps on crutches they’ve said they won’t help me. This is happening all across the UK and thousands of people like myself are left having to fundraise for costly pieces of equipment. I’ve got a big sum to raise for a powerchair that has electric functions like tilt and recline that will allow me to relieve some of my back pain, this will mean that I can spend more time outside of my home, with family and friends. Right now I spend 90% of my time laying on my bed, as that’s the only thing that makes my pain bearable. This new powerchair will be able to fully recline, almost like a bed on wheels so in theory I could spend all day outside of my house, depending on fatigue. I also need things like specialised seating and personalised changes to accommodate my long legs, it all adds up unfortunately.
This powerchair will open so many doors for me, I might even be able to return to some kind of education again (I had to leave school after my GCSEs) but most importantly I won’t be housebound, that’s where I’m heading if I don’t get a new powerchair. I’d be so grateful for anything you can do to help, even just a RT!
Donate to Shona’s GoFundMe page here.
When it comes to fashion as a disabled woman I often find myself being excluded. I rarely see disabled models being used on catwalks and campaigns and just dressing for sitting down all the time as a powerchair user can be tough and something that brands don’t take into consideration. Disabled people are quite simply not seen as a target market for most companies despite the fact that the purple pound (the spending power of disabled people in the UK) is estimated to be around £249bn a year. That’s a lot of money that brands are missing out on. So whenever I see something disability related when it comes to fashion I’m always interested – and most recently it’s a Yours Clothing post that has caught my attention.
Yours Clothing teamed up with disabled and plus size model, Katie Knowles, to create a guide on how to dress if you’re disabled. However, I was disappointed before the main section of the post had even begun. Yours Clothing described Katie as an ‘inspirational model’ and followed up with one of my most hated phrases: ‘despite her disability‘. Let me tell you why this is problematic. They said that Katie remains ‘positive and aspirational’ despite her disability but this is super problematic because saying ‘despite’ assumes that disabled people aren’t positive people, it assumes that we can’t be aspirational. These assumptions are super damaging and they reinforce the stereotyping that disabled people experience on a daily basis. Some people assume that disabled people don’t have anything to be happy or positive about and statements like this only contribute to this. I’d love them to expand on why Yours Clothing find Katie inspirational as well, if they are valid reasons like ‘she’s a badass model’ then great but if it’s more along the lines of ‘she’s inspirational because she’s disabled’ then that’s not so great.
I carried on reading though, in hopes that things would improve. The post was introduced as a guide using Katie’s own personal experiences so it surprised me when advice and statements about prosthetics popped up as Katie isn’t an amputee. I instantly wondered where this advice had come from – had an amputee been involved in the process? More than likely the answer is probably no. It quickly dawned on me as well that this post wasn’t ‘dressing with a disability’ but more ‘dressing with a mobility impairment’ as there was no mention of tips for those with a visual impairment, hearing impairment, learning disability etc. Enough people already assume that disability = physical without this post adding to that idea.
There’s also a part about prosthetics where the focus is on covering the joint and not drawing attention to the prosthetic – basically recommending to someone with a disability that they should be ashamed and hide. No one with a disability should feel ashamed of it and like they should hide it. By this point I was pretty frustrated and angry.
Throughout the post there were also references to dressing in flattering clothes and dressing for your body shape, I don’t know about you but I’m pretty sick of people and companies telling me that I can only wear certain types of clothes that look ‘flattering’ on my body shape. If you want to wear a dress that’s designed for pear shapes but you’re an hourglass shape, go for it!
I think Katie’s tips that are specific to her type of disability are great and as someone who has similar disabilities to her I can definitely agree with some of them. However, the focus on only one type of disability, the lack of involvement by people with prosthetics despite the advice for them and the problematic language meant that by the time I’d finished reading the post I was feeling very frustrated indeed. This was such a missed opportunity to piece together a post full of tips and tricks for every kind of disability, with people with first hand experiences of such disabilities involved. I see missed opportunities like this all the time and I often wonder when things will change, when brands will wake up and see where they are going wrong.
When you look at the top bloggers can you see yourself? Can you see disabled bloggers? Plus size bloggers? POC bloggers? You might do but likely they’ll be far out numbered by white, abled, slim women. So, you might think that minority group bloggers just aren’t that good but in reality there are some simply incredible bloggers out there that don’t fit in the ‘classic’ blogger type that we usually see at the top of the ladder. I follow a lot of stunning and stylish POC and plus size bloggers, I follow a lot of thrifty bloggers who don’t boast a huge budget like the ones at the top often do and I also follow some amazing disabled bloggers. I thought I’d share 10 of my favourite disabled bloggers and Instagrammers with you today, perhaps you could tweet us or comment suggestions of your favourite minority group bloggers?
Blog – fashioneyesta.com
Twitter – @DavisonEm
Instagram – @fashioneyesta2012
Emily is a visually impaired blogger, vlogger, writer and journalist who I’ve followed for a few years now. She started FashionEyesta in 2012 with the aim of challenging people’s perceptions of sight loss through her love of fashion and beauty. She aims to make fashion more accessible and inclusive and I am all about doing that too! I think visually impaired people can often be quite forgotten when it comes to accessibility and fashion so I love seeing what Emily does to educate people and improve things for everyone.
Blog – sarahinwonderland.co.uk
Twitter – @WonderlandBlogs
Instagram – @wonderlandblogs
I’ve known Sarah for a few years now, she’s a power chair user like me and we also both have connective tissue disorders so I’ve been able to relate a lot to her over the years! She talks about disability on her blog but mainly beauty and her Instagram feed is complete goals and so pleasing to the eye. Her blog is one of my go-to’s for beauty posts, especially since we both have pale skin and I have a wish list as long as my arm thanks to her!
Blog – whentaniatalks.com
Twitter – @whentaniatalks
Instagram – @whentaniatalks
Tania is a wheelchair user and again has a connective tissue disorder like me, I’ve also known her for a few years now but more recently I’ve really been enjoying her posts on how to style certain fashion pieces when you’re a wheelchair or crutches user. Her posts are really helpful and informative, it can be difficult finding clothes that look good when you sit down all the time but Tania really nails this!
Youtube – Annie Elainey
Twitter – @annieelainey
Instagram – @annieelainey
Annie describes herself as content creator and intersectional activist, she only came onto my radar about 6 months ago but she’s quickly become a favourite of mine ever since. She’s educated me on so many issues, everything from body positivity to intersectional feminist topics. She’s a disabled woman of colour who has so much to say and teach us!
Instagram – @fashionbellee
Twitter – @fashionbellee
Sophie’s Instagram is my go-to place for fashion and style inspiration! She’s a power chair user like me so a lot of what she wears will work for me too and she’s really helped me to embrace more colourful and bright pieces in my wardrobe. Her photos are always stunning and her feed is one that you definitely need to follow!
Instagram – @darlingiknow
Cailey is someone that I’ve only recently come across on Instagram but I’m in love with her already! She’s a fat positive disabled babe (her words and I totally agree) with amazing hair and a wardrobe that will make anyone jealous. Her makeup skills are out of this world and I’m pretty sure there is nothing that she couldn’t pull off.
Instagram – @michelle_roger
Project – Up & Dressed Project
Michelle is an Australian writer, speaker, blogger and fashion lover. She describes herself as disabled and fabulous and that she truly is. I’ve followed her for a while now on Instagram and like me she’s a power chair user who can walk a little. She’s the creator of the #upanddressed project which is all about documenting the times where you are able to get up and dressed, a celebration of an achievement that might seem small to some but for some disabled people it’s definitely something to applaud yourself for doing.
Instagram – @rvbyallegra
Ruby is another disabled Australian with incredible hair and gorgeous makeup! She’s a powerchair user and she is always looking fabulous, whether she’s dressed up or not. She’s also one of the best people I know for putting image descriptions on every Instagram photo too, I definitely need to do better (we all need to do better!).
Youtube – Sitting Pretty Lolo
Instagram – @itsLOLOlove
Twitter – @itslololove
Lolo is a disability lifestyle influencer and Youtuber, she created Sitting Pretty to show people her life as a physically disabled woman. She’s fighting the idea that disabled people’s lives have to be sad or anything less than amazing and she never holds anything back when speaking about her life. She comes across as such a fun person!
Instagram – @sitting_pretty
Website – rebekahtaussig.com
Rebekah is a gorgeous wheelchair user who always looks like she’s having a ball on her Instagram! She’s one of these people who tells a story below her photos, using Instagram almost like a blog and I always read it rather than just scrolling on by to the next photo and I always leave feeling like I’m so invested in her story. Her photos are great but the comment below them is just as good too.
I spend a lot of my time discussing disability related issues on Twitter and my blog and again and again it’s only other disabled people replying and sharing such posts. It’s only other disabled people nodding along with me, having the same conversations about how much we want change. It’s getting frustrating now and I wish that abled people were better allies to all minorities so, here’s a list of things you can do to become a good ally to disabled people.
1. Listen to us.
Listening to what we have to say is one of the most basic but important things you can do to support us and the disabled community, it should be the foundation of everything. Listen when we speak about ableism, accessibility, disability rights, access to health and social care, disability benefits. Listen to it all. If people just stopped for 5 minutes to learn about our lives then so much would change, people’s eyes would be opened.
2. Share our content, lift our voices but don’t speak over us.
Share our tweets, blog posts, articles, podcasts, share as much of what we put out as you can. Retweeting a post or a tweet takes seconds but is a method of support that is so appreciated by every disabled person I know. Remember to never speak over us though. Always prioritise a disabled voice over an abled voice when it comes to disability issues and you can even be more specific than that. When an issue mainly affects those with a facial disfigurement for example, prioritise their voice over someone who uses a wheelchair, for example, because the person with the experience is more often than not the most knowledgeable one on that topic.
3. Take time to educate yourself, I don’t have the energy to repeat everything over and over again.
I tweet everyday about disability issues. I often put out at least one, maybe two, blog posts a week about it as well. I don’t have the time to educate every single person individually so you need to educate yourself. Read our blogs, source our voices and learn about what we have to say. If you get stuck on something then ask us a question but most of us do not have the precious energy to spend on educating one person at a time, take some responsibility and do what you can yourself.
4. Advocate for disability rights.
Okay, so you’ve done the research, you’ve talked to actual disabled people and you’re more clued up than ever when it comes to disability rights. Now you have to start speaking up, telling people that we must do better. This is when you can share the content you read, sending people in the direction of disabled voices so they can be educated as well. When a building isn’t accessible, speak up. When someone uses an ableist word, speak up. Don’t stay quiet when something doesn’t seem right, it’s not down to disabled people alone to tackle these problems. Take your lead from disabled people though because no one knows how to advocate for disability rights better than an actual disabled person.
5. Encourage and work for inclusion in your own community.
I can guarantee you that there are disabled people within your community. Black disabled people. Plus size disabled people. Trans disabled people. They exist and you should be doing all you can to make your community more welcoming and accessible to them. Disabled people who fit into several different minority groups are often the most ignored, so change that. It’s not just about physical barriers either, it’s attitudes that need changing as well.
6. Be conscious of the language you use.
Be aware of the language you use and learn what the majority of disabled people prefer, and if someone wants you to use a different word or phrase then do that. Be aware of ableist words like ‘retarded’ and ‘crippled’, there are plenty of alternatives that are easy to think of and use. Don’t use disability as a metaphor and most importantly please don’t be scared of the word disabled, it’s not a bad word and it’s mostly abled people who have decided that it’s bad. Simply, educate yourself on disability related language and stop calling me ‘a wheelchair’.
7. Hire us and pay us for our work.
Hire us for your websites. Pay us for our work, our writing, our passions. We have have so much to say that is of a lot of worth so don’t expect us to work for free constantly. I’ve not once been paid for any articles I’ve written about disability for other websites yet, change this.
8. If you’re unsure of something, ask us about it, we always welcome sensible questions.
Don’t be afraid to ask us questions, sensible ones though. If you’re unsure about something then it’s totally okay to ask us for clarity, most of us welcome the opportunity to educate someone. Always be respectful though, if a disabled person tells you something that you don’t agree with then remember that it affects the disabled person not you so you don’t get to decide that you’re right.
9. Stop with the inspiration porn and sensationalising our lives.
Please stop with the inspiration porn, it’s exhausting. Stop sensationalising our day to day lives, are you really inspired by me getting out of bed? I doubt it. Stop sharing the ‘girl asks disabled guy to prom, isn’t she an angel’ articles and memes, they are damaging. I’m not an inspiration for leaving my house, so stop it.
10. Remember that a wide range of disabilities exist, they aren’t all physical or obvious.
Stop associating disability with just a wheelchair. There are such a wide range of disabilities out there, some are invisible, some aren’t even physical. Stop assuming that you know what a disabled person looks like, because there isn’t a look.
Most importantly, being an ally does not mean that you are taking charge or taking over. It’s all about learning and listening. You have to base everything you do off of disabled people and what they say.
Being a power chair user means that accessibility is something that I’m thinking about all the time, wondering if I can enter a building or get on public transport for example. However, accessibility runs so much deeper than just ramps and hardly anyone thinks about how things like the internet can be made more accessible.
When people think of disabled people they most often think of wheelchair users but there are plenty of other disabled people out there with a very wide range of access needs that must be met. These aren’t optional access needs either, to some it may seem like extra or special treatment but it’s to allow people to access things the same as abled people do. Hopefully the infographic below will teach you a little about a wide range of access needs that are rarely talked about and even more rarely put in place. We can all do better to make the internet more accessible and educating ourselves about how we can do better is the first step to improvement. Even just adding a description of the photo you’re posting on Twitter is a step forward.
Find out more with this infographic from Burning Nights.