Anxiety during lockdown
June 16, 2020
By Abbie Smart
Hey all,
Hope everyone’s ok, keeping safe and well at this unpredictable and strange time. When I first heard about Coronavirus, I naturally felt anxious and concerned about the virus, but after I got over the realisation about what was going on, I settled down into staying at home and made sure I kept busy. I have found that I am happier and a lot more relaxed than I was when we were all going out and had a ‘normal’ routine.
It has actually made me a better person, making me realise what is important in life and what really isn’t. It has taught me to not to take everything so serious and treat everyday as a new day, don't hold grudges because there are more issues going on in the world to carry on with our problems, its just easier to move on and think how positive we can be.
Before Coronavirus and lockdown, I was very busy with going to the gym, doing work placements and just generally going out for leisure. So when we went into lockdown, I thought how will I stay busy and thought I would be so bored. But within a few weeks, I felt so happy with doing my exercise and chilling with lots relaxing activities like reading and watching Netflix - I haven't had time to become stressed and anxious. I just want to say to if you are feeling low or dissatisfied about the situation, plan your day around positive and great things that will keep you occupied and happy, whatever you are interested in - it could be reading, writing, video games, watching films or shows etc. Things like these will relieve any stress or concerns about the pandemic and just keep the anxiety down, allowing people to feel calm.
Anxiety is hard to cope with anyway but especially on lockdown, I feel for those that have really bad anxiety as they may get bored and down really easily. I would say as I sometimes suffer with anxiety is to try to occupy the mind with something that they enjoy and keeps them from constantly thinking about the negative. Take something that makes you feel negative and try to turn it into a positive. This will make you feel happier and then it will change your mindset of something that you feel anxious about. I assume that over lockdown people have experienced a type of anxiety or concern but keeping ourselves safe and distracting ourselves with lots to do will keep our minds off the obvious that is causing us worry.
As we slowly come out of lockdown, I am getting nervous and anxious about what will be our new ‘normal’ but I am certainly not rushing into doing anything that I don't feel entirely comfortable with. I'm going to take my time and do things when I feel safe to do so. We all just need our own time to do what we feel comfortable with and safe to do. So I know there will be people out there that they are feeling a lot of different emotions about going back to a new normal and that's ok to feel that way.
If I could say anything, it would be it is perfectly normal to have anxiety throughout or after lockdown and nobody should feel guilty about any emotions that they are having. Just do what you feel comfortable with and make sure you are happy with your choices.
Four years of being employed…the sky is not the limit, it’s just the beginning!
June 10, 2020
By Chloe Plummer
Four years ago on 6th June 2016 was my very first day of paid work. I remember the day well, incredibly nervous but excited at the prospect of starting work for the very first time. However, what happened before I reached this point wasn’t quite what I had expected…
As I came towards the end of my sociology degree I went to a few lectures about employment after uni and every single one of them reinforced how competitive the job market is for graduates. Naturally that made me worry about what might be out there for me and I also had an ongoing worry in the back of my mind that even if jobs were out there, would by disability put people off from employing me? Looking back now I know that I didn’t need to worry about this at all, but at the time the worry was real and what I was about to experience only reinforced this.
Even though this thought was constantly in the back of my mind it didn’t stop me applying for jobs. I moved back home from uni the day before my brothers 18th birthday at the end of May and spent hours each day trawling through job sites and applying for whatever job I matched the description for. At the time I didn’t really know what I wanted to do career wise and knew the priority for now was to try and get some kind of job as a starting point.
As well as applying for jobs online I also visited some of the local job agencies in the town centre. One sunny afternoon (before I passed my driving test) I decided I would get the bus into town, stop of at one of the agencies to see what information and jobs they had available before I went to visit my Gran.
I walked into the building still nervous about things but feeling hopeful that they may be able to help. I walked up to the gentleman on the welcome desk and explained I had recently graduated from university and was looking for a job. He asked me to take a seat and told me someone would be over to chat to me shortly.
A few minutes later a lady appeared and asked how she could help. I repeated the same thing as I did to the gentleman on the door, but before I could finish she told me that she would be back in a minute. I assumed she had gone off to find some paperwork for me to fill in so I took a seat again.
As she walked back over I realised she didn’t have any paperwork in her hand and instead was holding a small piece of scrap paper with an 0800 number on it. She handed me the piece of paper and said “call this number, they should be able to help”. I looked at the piece of paper and the words next to the number and realised this was the number to call with any queries relating to claiming benefits for those who are unable to work.
For a moment I was incredibly confused. I had made the trip that day in the hope of finding a job and instead the information and advice I was given was to claim benefits. I can only assume this assumption was made as I had walked into the building using my walking frame.
“Thank you” I said, “but I’m not here to enquire about benefits, I’m here to find a job”. The lady looked at me a little bit puzzled and then asked if I was ‘fit to work’. Again, I can only assume she had made the assumption that I was ill and that was why I needed my frame. I was 21 and fresh out of uni, I was definitely not ill so I answered yes to her question, of course I was fit to work. Not accepting this, she then asked me this question again and when I replied again with the same answer she told me I would need a doctor to prove this. I couldn’t remember the last time I had even visited the doctors and definitely didn’t think I would ever need to visit to prove I was fit to work! Confused even more I acknowledged what was obvious that yes I do have a disability but that doesn’t mean I’m unwell and can’t work. I realised at this point I wasn’t going to get much further so thanked her anyway and slipped the scrap piece of paper into my pocket.
I left and went up to visit my Gran but my thoughts were a million miles away. Maybe my worries were true after all, maybe I wasn’t meant to be employed which is why the lady handed me the phone number to enquire about benefits? Later that evening I spoke to my parents about what had happened and also shared a post on my Facebook page about the experience. Everyone who commented and my Mum especially, was totally shocked and angry that this had happened but for me my worries had just got even worse.
Determined not to let these worries get the better of me I decided that using these agencies wasn’t for me. Not only had I had this bad experience, but many of the other agencies I visited were up long flights of stairs making these inaccessible for me and many other disabled people. Whilst I appreciate that such places don’t always have a say in the buildings they work from, looking back now I can’t help but think this indirectly reinforces the attitudes that do sadly still exist, that work isn’t for disabled people that I had already witnessed.
Taking things into my own hands I looked back to my work experience I took part in whilst still at secondary school, 6 years earlier. Compared to all my friends I definitely hit the jackpot with my work experience as I got to spend not one, but two weeks working in the fundraising team at a truly amazing disability charity close to my home called Enham Trust. (If you are reading this and aren’t aware of their brilliant work please check out the website http://www.enhamtrust.org.uk)! I absolutely loved these two weeks and was made to feel so welcome. I got involved in so many different aspects of fundraising from speaking to potential supporters on the phone to helping to organise and plan for an open morning to thank the charities supporters. I didn’t realise it at the time but I truly believe this was what sparked my interest and passion for fundraising which is now a huge part of my life. I carried on volunteering for Enham Trust throughout my summer holidays at school, college and uni so I wondered if now my education had come to an end could this become something more?
I searched the Enham Trust website for their vacancies and I couldn’t believe my luck when I saw a part time role was being advertised for an administrator within the fundraising team. I applied straight away and was delighted a few days later when I got a phone call asking me to come for an interview. I went for the interview later that week and whilst I was pleased with how it went I still had a lot of worry and doubt in the back of my mind. The ladies who interviewed me told me they would get back to me within a couple of days so I was shocked when I received a phone call from them just a few hours after the interview. I couldn’t believe it, I was offered the job and was going to start in a few weeks time once all the normal checks had gone through! I was in shock but on cloud nine, someone wanted to employ me! Almost instantly all my worries about ever finding a job disappeared. I slept like a baby that night and spent the next few weeks getting a wardrobe of work clothes and brand new stationary organised!
When the 6th June finally arrived I was so nervous but so excited that I was officially employed. My first day went by in a flash as I was introduced to so many different people and started learning the basics of my job. I went home that night and told all my friends and family how much I had enjoyed my day and couldn’t wait to go back a few days later, as for the first few months I worked 3 days a week part time. As the weeks went by I learnt more and more about the job but also about fundraising which fuelled my passion even further. I also remember how exciting my first pay day was! I’d never really had my own money before, surviving through uni on my student loan and help from my family, so this was super exciting. I went out and brought two new pairs of trainers and some clothes I had my eye on for ages, priorities and all that!
A few months later a full time position became available which I was offered and I accepted straight away. Since then my role has changed and progressed in many different ways as I continue to gain more experience and knowledge with fundraising. I will forever be so incredibly grateful for all these experiences that have enabled me to build a career I truly love and is one I can see myself working in for many, many years to come.
Enham Trust are also Disability Confident Leaders, part of a government scheme designed to support employers to recruit and retain disabled employees and their talent into their organisation. Given my previous experience this is something I am incredibly passionate about and have been very fortunate enough to be given the opportunity to speak about this, and how Enham Trust have supported me as a disabled employee to not only retain my job but to also keep progressing within this. Over the past 3 years I have spoken to various rooms full of people (including members of parliament!) about how important this is. I remember the very first time I spoke at an event like this, I was so, so nervous and I struggled to control my shaking legs with nerves! I remember the advice our CEO gave me and is something I still do today when speaking in public, pick a point on the wall in front of you to focus on and look at this rather than at whoever is watching you. This advice really worked and the talk went well and is now a talk I have given a handful of times and is something I really look forward to. Whilst the nervous shaking leg still likes to make an appearance I feel like my confidence with this has grown and is completely different to the Chloe who nearly forgot to breathe during a uni presentation due to nerves!
However, most importantly for me today, 4 years on from my very first day at work, my job is now far more than just a job or a 9-5. The incredible support, encouragement and fantastic opportunities I continue to receive from my team and the wider organisation at Enham Trust have been the biggest boost to my confidence and self esteem. My disability has never, ever acted as a barrier to any of these amazing opportunities and the fact that I do use my frame is irrelevant. I’m just Chloe and to me that means the world. I feel incredibly valued and have a real purpose to get up everyday which has helped in ways I could never explain over the last few months following the loss of my best friend. I am so lucky to work on a daily basis with some of the loveliest people you could ever meet, who over these past four years have become some of the many friends I have made along the way, and have showed me so much kindness and love through some very dark days recently.
Whilst life at the moment has many challenges and bumps along the way, my first four years of being employed have been some of the happiest I have ever experienced and have opened up a whole new world. The experience in the job agency wasn’t what I had expected, and I am so glad I didn’t accept the advice given to me. However I’m sadly aware that my experience is not unique and disabled people do continue to experience prejudice in many areas of their lives, including employment. I feel extremely passionate about challenging and changing these negative attitudes and hope that I can continue to use platforms like this, and other forums I am involved in to make this change, so that one day all disabled people can believe what I do….that the sky isn’t the limit, it’s just the beginning and their possibilities are endless.
Thank you for reading and have a lovely weekend!
Love, Chloe x
Disability Education
January 09, 2020
By Melissa Cassidy
I’ve recently done a presentation to my main class on disability, what my specific disability is and how to treat people who are disabled. It went really well and I’m hoping to do another one to my entire school. This got me thinking, why isn’t disability education something schools teach?
From my first year of Secondary school I’ve met my fair share of ignorant people, people who speak to me like a 2 year old or people who are straight up terrified of even the concept of a wheelchair. This has made me passionate about educating people and talking openly about my disability because I have realised that if I want people educated on disability then I’m the one who’s going to have to do it.
The response I got from my class was amazing, I made some really good friends and felt more comfortable being myself. Talking to my class was something I was prepared and proud to do but not everyone with a disability is comfortable with doing. I really wish that disability education was taught in primary schools because even basic things like differences between physical disabilities and mental disabilities would have made a huge difference to my first year and other disabled people in mainstream schools.
I personally think that disability education should be a norm in every school. We all meet disabled people at one point in our lives.
A little education goes a long way.
Thank you for reading.
Dear 5-year-old me
September 29, 2019
By Mary-Elaine McCavert
Dear 5-year-old me,
Don’t worry, you’ve got this. You really do! You will adjust to your first splint, your first walker, your first physiotherapist, your first friend that doesn’t live life as you do. You will adjust to your first mean name, your first time feeling left out, your first time wondering what things would be like if you weren’t “different.” You will adjust to it all because you can.
You will adjust to daily accessibility challenges, you will adjust to hospital life and home life, you will adjust to school life, university life and work life. You will adjust to the stares, the assumptions and the lack of knowledge. You will adjust to it all because you can.
You will adjust to new symptoms, new medications, new frustrations. You don’t have to love any of this, but you have to learn these experiences do not make you lesser or inferior. You will adjust to insecurities, fluctuating self-esteem and fears for your future, and you will realise you have a right to live your life as much as everyone else does. You might sometimes feel you have to hide or apologise for your disability, but don’t do this. You owe it to you to be you. It will take time and it might be a rocky road at times, but I promise you will adjust to it all because you can.
You will live a wonderful, rich, vibrant life because you can.
Have a lovely day,
Mary-Elaine McCavert
Brains on Wheels
April 29, 2019
By Ailsa Speak
Hi everyone, I’m Ailsa. I am the proud owner of Brains on Wheels. Brains on Wheels is my personal blog, where I write about my experiences surrounding my disabilities. I would like to thank Ellie for letting me write for CP Teens UK…
I live with Cerebral Palsy, I wouldn't say that my disability is that severe because I can do a lot of things and there are people who are worse off than me. Here's one thing that I can do: I can use my feet to use my computer, I can do this quite easily.
I aim to raise awareness about disabilities because I feel that it is an important subject for everyone to be aware of. I think so many people just dismiss me because they think they won't be able to understand me or the other way around. There is no doubt that other people feel the same way about this, so I want to help to put a stop to this.
I feel that too many people are afraid to talk about disabilities because they think that they might offend another person or they might feel awkward talking about it. In my opinion, you have nothing to stop you talking about things and if other people don't like it, then it's their problem, not yours. Never be afraid to talk about disabilities or illnesses.
If you don't talk about it, then it will be even more awkward because you will be for ever thinking about what not to say and our whole society will become silent when it comes to talking about disabilities and illnesses. If nobody talks about disabilities and illnesses, how are people going to learn?
When I was born, I didn’t breathe. I was stillborn, but I was resuscitated, it took the doctors about twenty minutes to resuscitate me.
As far as I'm aware I was fine when I was in my mum's womb, when I came through the birth canal the doctors lost my heartbeat, which is normal, but when I came out, I didn't breathe. At this point, the doctors didn't know whether I would live or not. Then they said I would live but they didn't know how long for and what quality of life I would have and how long I would live for.
Finally, they said I would live a decent quality of life, like anyone else.
Around five percent of babies are born on their due date, and I was one of them. As a result of me not breathing, in that period when my brain didn’t get the oxygen it needed, brain damage occurred. I was on a ventilator for two days; the ventilator took breaths for me by pumping oxygen around my body and into my brain. I had tubes all over me, this was to help me breathe. If I didn't have the tubes on me, you could never tell that there was anything wrong with me because I was a perfect colour, all the other babies were premature or they had something wrong that was visible.
There were about three stillborn babies on that day, and I was the only one that survived. The doctors gradually turned my life support down so they could find out whether I would breathe on my own, and I did. I came off the ventilator on my sister's birthday, which was a wonderful birthday present for her.
My type of Cerebral Palsy is called Quadriplegic (affects all four limbs) Athetoid (uncontrollable movements) Cerebral Palsy and it effects every muscle in my body, apart from my heart, luckily. My right arm is affected more than my left, I can hardly use my right arm because my muscle tone is worse in that arm, for example, I have more involuntary movements and my right arm has become weaker over the years as well (I have a feeling that this is because I didn't use it much when I was younger).
I like to be as independent as possible, but there are some things I need help with. As well as blogging, I campaign about different issues that may arise. At the moment, I am campaigning to make the owner of Instagram, which is Facebook, aware that Instagram isn’t accessible to everyone due to it being a mobile phone-based app. In the end, I am hoping that we can get enough petition signatures to make Facebook listen and get them to make Instagram accessible to everyone. You can read more about this on my petition here: https://www.change.org/p/facebook-make-instagram-accessible?fbclid=IwAR2WAFFv-bYbs22_esRgR5XJyxq_-qZNJDhayApkNSkzjRwuAqqAeyJd5uE
People often say that they "feel sorry" for me and that makes me feel unhappy and awkward because I am who I am, and I can't change that. I don't want anyone to pity or feel sorry for me just because I have Cerebral Palsy. If I didn't have C.P., I wouldn't be the person I am today and I wouldn't have met some of the awesome people I know! So, next time you think of feeling sorry for me, please don't. If you asked me, I'd say I am very lucky to be here today.
Thank you for reading this, I hope to see you again over on my blog. Read more about what I get up to by visiting my blog here: http://ailsas.wixsite.com/brainsonwheels (Brains on Wheels)
Finding my feet in the adult world
April 15, 2019
By Abbie Smart
Hello,
We have all been there, it’s coming to that time where a lot of young people, disabled or not, are finishing school, college or university and having no idea what their lives will map out for them next.
Finding something to do is especially hard when you are trying to be independent as much as we want to be, because we like keeping up with other people our age are doing - it is really tiring when we want to do something like everyone else. However, people with disabilities have so many other things in their lives like physio and other activities to help them to become stronger and more independent - this sometimes takes priority and the other things can be hanging over them waiting to be done. It's a hard thing to work out what is the best plan and when is right to start working on them.
I think becoming an adult is a lot harder than when we are children, because when we are children a lot of decisions are made for us. When we get older we need to start making some decisions for ourselves, this can be very exciting as we can have our say on what matters to us. However, it can be difficult when we have a added complication of our disability and everything that we would like to is possibly out of our reach.
However, I feel that when we get the right support, we achieve things that we thought weren't imaginable. I love the incredible things I have done throughout my life but I wouldn't have done these things without the support I needed.
I love being independent as I bet others do to, but without the support I don't think I would be as independent as I am today.
I feel that I have started to find my feet with how determined I am but I have a long way to go. I am happy with my life and I am looking forward to getting somewhere that I want to be in life.
Thanks
Abbie x
Cerebral Palsy Awareness Month
March 19, 2019
By Georgia Vine
I’m Georgia and I was a premature baby by 5 weeks. It was apparent from birth that something was wrong as I was in intensive care for 2 weeks and during this time, I was having regular seizures. I eventually got my diagnosis of spastic CP when I was 18 months old with my official diagnosis being Spastic Diplegia Cerebral Palsy with ataxic/dystonic features, however as my parents had no experience with CP, they didn’t know what to expect. It was more noticeable as to how my CP was going to affect me when my younger sister was developing faster than me. But my parents were very determined to help me, for example, making me walk regularly and doing physiotherapy with me. I believe if it wasn't for them, I wouldn't be able to achieve the things I'm doing today.
So once I was diagnosed, I was obviously back and forth to the hospital. CP affects me in all 4 limbs, pelvis, trunk, head control and my speech is also affected. My cerebral palsy affects both fine and gross motor skills, I can walk short distances like around the house but most of the time I use either a manual or electric wheelchair.
I always have kept active doing dance lessons, drama lessons, swimming lessons, tennis lessons, horse riding and wheelchair basketball. I have never let my disability stop me as you can tell from this list. Some days are good, but others my CP really gets the better of me and I struggle just to do a simple task as I can use up to 5 times as much energy as most people, so it is very tiring at times. I do get frustrated at times when I can't just do my hair or put my jewellery on, but I am very lucky to have my family to help me do these little things.
But even though my body doesn't function as easily as others, it doesn't stop me as I am currently at university studying Occupational Therapy, something of which I would have never chosen if it wasn’t for my previous experience with OT. I’m loving life at university and I believe that occupational therapy is the perfect course for me. However, at times I do wish that I was able to live more of the ‘student university life’ as being so dependent on my parents means that living in halls would have been extremely difficult for me as all my energy would have gone into looking after myself rather than focusing on my work. I still go on nights and days out with my university friends, although I do wish that I could go on a night out more often as there have been a few occasions where I’ve had to turn a night out down due to fatigue. Not only this but as a result of CP, I also have epilepsy, so I must make sure I’m fully fit for a night out.
I have also been playing the piano for 9 years now, the piano has been a great source of therapy for me as it has helped me to improve my fine motor skills. Not only this, but it has also enabled me to become more confident that I can overcome any hurdle given!
Having CP means that a few hurdles crop up when least expecting, but with the right attitude and determination, I will get over these hurdles. I am lucky to have a very supportive family that are behind me 100%, as some days, even though I don’t want to admit it, I do need help.
CP awareness month means a lot to me as it gives me the opportunity to write blogs like this because people often think that as a result of my CP, I just get more fatigued - when it's actual fact that it is much more complex. I also love this month as I can read other stories about CP and learn a lot more as no 2 people with CP have the same needs.
I wanted to share my story to enable people to get a glimpse of what goes on behind closed doors. I consider myself extremely lucky that my disability isn’t life-threatening and that I am able to live a fulfilled life, however I still face challenges daily. Facing these challenges can be frustrating but I would never choose a life without CP as without CP, I wouldn’t be the person I am today.
Happy CP awareness month 2019!!
Thank you for reading I hope I have given you just a little bit more insight into CP.
Georgia Vine.
@georgiaanv
My Speech Impairment
December 17, 2018
By Georgia Vine
My speech impairment is something that I’ve never talked about before, I guess this because I always thought it was because of my CP and when I was younger I just thought everyone who has CP has a speech impairment. But now I’ve got older and have more of an understanding about the variation of CP and I realise that not everyone with CP has a speech impairment.
When I was younger my speech was worse and I often got ask to repeat a sentence multiple times which would get me down to the point where I would say ‘it doesn’t matter’ or I would get my parents to say what I was saying for me. I suppose this used to get me down more so than now because you hear your voice different to how others hear it therefore I used to think ‘my voice is clear so why can’t you understand?.’ Now I understand why people find it hard to interpret what I’m saying but I still forget how complex my voice is until I hear it back on a video and sound recording.
I’ve never hated having a speech impairment as I’ve never known any different but as I’ve got older I find it getting in my way even more and I’m becoming more self-conscious about it. This is because I find myself making more phone calls therefore I get frustrated when I’m having to repeat myself numerous times over the phone. I also find doing presentations quite difficult because I never know if what my audience can understand what I’m saying when I’m presenting to people I don’t know. However there’s always a way around obstacles and therefore I often print out handouts so they then get a general overview of what I’m saying.
I still sometimes get my parents or whoever I’m with to order for me in a restaurant or I write down my destination for the taxi driver. The frustrating element isn’t the fact that they don’t understand me because I get that they can’t help it, it’s the time factor that’s annoying. It’s when the taxi driver starts driving and then has to pull in 2 minutes later so you can show the driver your destination. But I’d rather someone ask me to repeat something than just nod and pretend they understand because this is even more annoying as you can tell they don’t understand. I try to control my voice but when I’m laughing and I am excited this doesn’t always happen and sometimes I need to be reminded to slow down. However my speech impairment is part of me and it always will be a part of me and without my ‘funny voice’ I wouldn’t be me. I wouldn’t change this and mostly importantly it will never get in the way of my confidence.
Thank you for reading,
Georgia Vine @georgiaannv
The Sky's The Limit
November 27, 2018
By Gareth Herridge
November was quite the eventful month in the world of disabled flying! At the beginning of the month we heard the story about Justin Levene who, after his self-propelling wheelchair was left behind on a flight, chose to drag himself through Luton airport rather than lose his independence and risk developing a pressure sore by being pushed around in a rigid airport chair. Then a couple of weeks later, another story broke about Darren Belling who, when needing to use the bathroom on a flight, was told there were no chairs on board to transport him to the toilet so he would need to either go in a bottle (after first paying for a blanket to cover himself with!) or cross his legs for the remainder of the flight!
Due to legislation such as the Building Act 2004 and the Equality Act 2010, every effort is made to ensure newly erected public buildings or places of business are wheelchair accessible, and wherever possible, older buildings are being adapted to make them more accessible. Hotel chains have specially adapted rooms in each of their hotels for disabled guests. The vast majority of public buses and black cabs now have ramps built into them, and trains have wheelchair ramps either on board or waiting at the stations. Of course none of this is perfect and there is still plenty of room for improvement: Some ramps are way too steep to be attempted independently, the London Underground is still largely an inaccessible nightmare, and there is a huge difference between an accessible hotel room with a few grab rails by the bathtub and one with a roll-in shower plus drop-down seat. Still, progress isbeing made or at the very least attempted! Therefore, questions need to be asked as to why, at a time when access for allis being so strongly promoted in every other aspect of life, airplane/airport travel seems to be languishing decades behind?
When you arrive at the airport, the first thing you have to go through is the gruelling process of wheelchair check-in, made ten times worse if you’re travelling in a herd! Oh and if anyone happens to have battery-powered wheels, prepare for a lengthy grilling! Eventually though everything gets processed and tagged, including the chair you’re sat in, so you are now free to roll around the airport like an escaped piece of sentient luggage; all the while praying that none of your vital medical equipment or Active Handsgripping aids (never leave home without them!) get misplaced on their way to the airplane.
The next bit of fun occurs when it’s time to board the aircraft, which means surrendering yourself, dignity and all, to the mercy of...the aisle chair! This two-wheeled, ‘slimline’ device is designed to fit comfortably down the aisle of any aircraft, meaning that the seat is very narrow, often leading to a farcical balancing act as you are forced to make a split second decision which of your buttocks is going to be sacrificed and left dangling over the edge! You are then secured to the chair with enough straps and harnesses to make Mr Grey blush, before being tipped backwards and dragged on board, the one small mercy being that wheelchair passengers get boarded first, so we are spared the indignity of being carted onto the plane in full view of every other traveller. Except it doesn’t always work like that. No, I can in fact state that on well over 50% of the flights I’ve been on, by the time I get taken on board, the airline has very thoughtfully let everyone else take their seats, ready for the main event; as I’m hauled onto the aircraft and down the aisle whilst tilted backwards and strapped to a chair like a convicted serial killer on his way to death row!
As you may be able to tell, I can generally see the funny side in a lot of these issues, and none of them are going to be deal breakers when it comes to travelling abroad. However, if you’re planning on taking a flight somewhere and are feeling at all unsure about any aspects, then my advice would be to look online for answers after which, if it’s still unclear, contact the airport or airline directly and get your queries answered in writingso you have written proof if needed.
One thing I do find completely reprehensible is when an aircraft offers absolutely no solution for how a wheelchair user is supposed to access the bathroom, meaning they are required to urinate into a bottle or bag, then either give it to someone else to pour down the toilet or keep it on them until they have disembarked! And that’s assuming they only need to pee! How is it that we’re able to take a giant, hollowed out hunk of metal and get it to fly, yet we’re unable to figure out a way of offering access for allwhen it comes to the bathroom?! A couple of years ago, on the way to Rio, I went an entire eleven and a half hour flight without going to the bathroom, purely because I didn’t want to have to suffer the embarrassment of draping a blanket over my head whilst catheterising myself and peeing into a bag in the middle of the plane. This meant having to limit how much liquid I consumed during the flight and even then, the last hour or so was fairly uncomfortable, not to mention the whole thing being pretty unhealthy for my body. I know this was a choice I made myself, but I really shouldn’t have had to.
The fact that there is often no dignified way for a wheelchair user to go to the toilet on a flight, the fact that, despite guidelines stating otherwise, we are often boarded last, and the fact that the vast majority of airports only provide rigid, geriatric wheelchairs that cannot be operated independently suggests, at least to me, that disabled passengers continue to be an afterthought when it comes to flying. In order to combat this and move forward, changes need to be made from the ground up. It is my firm belief that, in all jobs involving the public, a basic level of education is required when it comes to catering to the needs of people with disabilities. I’ll be the first to admit that when I was younger, if I saw someone in a wheelchair, I naively assumed that their legs didn’t work and that was it. A greater understanding is needed on the vast scope of disabilities; from CP to MS, spina bifida to spinal injury, and the sooner people are made aware of this then the sooner appropriate action can be taken to ensure the needs of everyoneare taken into account and solutions can be formed.
And once this has been achieved, then the sky really will be the limit!
Gareth Herridge
Mainstream and Special Education: The Differences
November 12, 2018
By Abbie Smart
I have attended both mainstream and special needs schools and college and I have noticed there are a lot differences between them.
For instance, when in mainstream school I was the only one who was disabled and in a wheelchair. This was hard for me to be able to keep up with my fellow peers as I found that everyone was doing their own things and I wasn't able to keep up because it was too difficult for me to join in. Therefore I was a bit isolated.
However, when I started and attend a college for special needs students I felt that there were lots of people in the same position as me and I felt we were able to understand each other on another level and understand how we think and feel about situations that mattered to us.
I did enjoy going to a mainstream school as I was able to feel like a typical student and be able to sit my exams but I didn't really get much else out of it. I got myself stressed out over work and basically didn't really want to be at school. I can't say how many times I cried over the fact I couldn’t understand my homework.
But at college, I am able to focus on what is important to me at my own time and pace. I was able to get to know myself a lot more and I feel that I am able to manage my anxiety and the way I deal with things in a bit of a better way.
Now I'm in my third and last year at college, I am still very anxious about things sometimes but with support I am able to tell people what is the matter without causing so much of a fuss. I plan more so when something big happens I am in not as much of a panic to deal with it.
The main thing when looking at what school or college is best for you, is being happy where you are. You need to be happy with what you have to go forward in life. Being happy with life will make things seem a lot easier to cope with.
Thank you for reading
Abbie xxx
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Being accepted as someone living with CP
April 16th, 2021
By Cameron Wood
In recent months I have felt accepted as someone living with Cerebral Palsy and that is thanks to CP Teens UK.
I have started to engage with the events that this awesome charity run and those events have included the 'No Bangs Bonfire Night' and the CP Teens UK Virtual Pizza Night.
These virtual events have made me feel accepted for who I am as it is not easy to find friends if you are in a wheelchair or have a disability.
At the age of 24, I don’t really feel like a teenager anyone however I have been made to feel very welcome by the CP Teens UK family.
I am excited to be a part of the charity's next virtual event in just a few weeks time as it will again give me the chance to feel accepted.
I think that it is important that young people with disabilities, especially Cerebral Palsy, feel that they are accepted by all for just being them.
Over the last couple of years, I have been working hard to ensure that all young people who have a disability are heard if they live in my home town.
I have been able to achieve this aim by working with local disabled young people to find out what it is they actually need/want to make their lives better.
I believe that the work of Ellie and the team at CP Teens UK does ensure that children and young people with Cerebral Palsy are given the opportunity to engage with other young people like them.
I have been proud to engage with their events during the coronavirus pandemic as this has helped me to keep on top of my mental health.
When the pandemic began I stopped venturing out in order to keep myself safe from the virus so relied on the events that Ellie and her team put on to engage with the outside world all be it via social media.
I will be turning 25 later this year and will then continue to keep up to date with the work that this incredible charity do.
Having Cerebral Palsy does in some cases limited what you can do and I am delighted that CP Teens UK support young people to live an as normal life as possible.
I wish that there had been charity of this nature when I was growing up because they would have given me the opportunity to engage with other young people like me.
I have found other friends with the condition via social media and the college that I went to where I was able to meet other young people who are like me.
I hope that children and young people living with CP feel that they are represented by charities/organisations like Ellie’s amazing charity.
It has been awesome to see so many children and young people living with the condition engaging with the work of this national charity.
I would encourage all children and young people who are living with the condition during these very uncertain times to engage with the events that CP Teens UK run.
Cam
My advice for 'CP Teens' in lockdown
January 13th, 2021
By Melissa Cassidy
Lockdown has been a really challenging time for everyone but I think it’s safe to say that when you’re disabled and stuck in the house all day, it can be challenging to keep busy and not get down and bored. As a 15 year old who is usually one of the busiest people you’ll ever meet I’ve found it difficult to keep myself positive and motivated during lockdown so I’ve come up with 10 tips on staying healthy and happy during lockdown.
Have a routine
I know many people will have online schooling or work but I think along with that it’s really helpful to have a handful of things that you do every day. It doesn’t have to be anything major but even just giving yourself small tasks to do daily like cleaning your room or even just reading a book can make it real difference to how you feel that day.
Self care
It’s obviously important for everyone regardless of disability to look after themselves but I think as a disabled person, sometimes it’s difficult to remember that you deserve to look after yourself just as much as anyone else. I know it’s difficult sometimes to do some of the more mainstream acts of self care like having a bath or painting your nails but it’s important to remember that self care is more than that. For example, putting on you’re favourite outfit just because you can, putting on your favourite perfume or after shave, or even just taking extra time when you wash your face to really clean your skin.
Exercise
So, this one seems pretty obvious because I feel like everyone has been talking about keeping fit and online exercise classes but I think that as a disabled person, you need to be mindful of what you’re doing and how much you’re doing because you don’t want to end up getting too tired out or just not being able to do some of the exercises. My advice for this is that you should just try and do what you’re comfortable with. It’s great to try new exercise classes on YouTube but it’s also totally fine if you try one and can’t manage it. I know some of the people reading this will be full time wheelchair users which definitely makes it more challenging to find things suitable for that. I’m aware that Joe Wix has done some exercise videos for “elderly people” which are all sitting down exercises so despite the name, I think that could be really helpful. Also just doing some physical therapy exercises is really good, especially if you maybe didn’t have time to do them before.
Fresh air
I’d say one of the most important things to keep you both physically and mentally healthy is making sure that you’re getting enough fresh air. Going out for walks or going out in your wheelchair can really clear your head and helps a lot if you’re feeling anxious about lockdown. Even on days where you don’t feel like going out, opening a window or spending time in your garden can really make a difference.
Meditation
I think it’s very important to take care of yourself both mentally and physically and meditating is a great way to look after your mental health. When I say meditation I think that you can take that in a few different ways. For example, some people might like to do a proper guided meditation but not everyone likes that. Meditation can be whatever you need to do to relax and clear your mind. I think it’s just important that you take a moment to just forget about the pandemic and whatever’s stressing you out and just breathe and be calm.
Communication
Communication is so important right now, and it can be really challenging to try and keep in touch with friends and family but I think that everyone needs to just make a real effort to not loose touch with the people around them. It’s also important that we still try and create new friendships as well through things like CP teens, or Social media, or even just reading and interacting with blogs like this one. Talking to people and being open is so beneficial because it helps you and the person you’re talking to.
Projects
Sometimes being stuck at home can be really boring, even if you have a good routine, it’s hard not to get tired of life and burned out. I think a good way to keep yourself entertained and to keep your brain working is to start a project. For example, I recently started my own blog and I’ve been working on that which has really helped me stay motivated to do things and work on myself but there are so many other types of projects you could start like writing a story or painting or learning how to do something you’ve always wanted to do. You could even have projects as simple as clearing out your wardrobe or gardening. It’s just something that will be exciting for you to do and motivate you through this time.
Work on your own independence
Lockdown is a great time for disabled people to start working towards practical goals. Recently in lockdown I’ve been trying to learn how to cook, which is something I’ve always wanted to do and needed to learn for later in life but because I had school and my other hobbies, I never really had time to properly experiment with making food and figure out how I could do things. I think it’s really important that we take time to work on these things and set small goals to work towards. It doesn’t have to be as big as cooking, it could be getting dressed yourself or using cutlery. Working towards personal goals can also really help to keep yourself busy and productive.
Experimenting
No, I’m not telling you to go and mix a bunch of suspicious chemicals together or do anything dangerous. Experimenting with your daily routine or the way you do certain tasks can be a great way to improve your independence and general mood. Even just trying new ways of doing mundane tasks like making your bed can really get your brain thinking of better ways to be independent. For example, I recently started folding my clothes a different way and it really made sorting out my drawers a lot quicker. Playing around with how and when you do things can really shake up life if it’s starting to feel a little mundane.
Give yourself a break
Lockdown is a really difficult time for everyone so sometimes it’s totally fine to just stay in your pyjamas and watch movies, giving yourself time to be lazy is important. Of course you shouldn’t stay in bed all day every day, but if that’s something you feel like you need to do that day then you are totally entitled to that because your daily productivity is not what defines you.
Thank you very much for reading this and I hope that it helped some of you improve your lives in lockdown.
My blog: https://melcass4.wixsite.com/buttonsandramps
My Twitter: @ramps_and