Passing My Blue Badge Assessment

I recently was approved for a Blue Badge for disabled parking and I thought I'd write a little post about what the assessment was like. In the UK you may be able to get a Blue Badge for parking if you have mobility issues to park close to your destination, and depending on the place this may give you free parking too. This can be given to the disabled person for them to use for parking or someone else who is driving them, and in my case, it's for me to use when someone else takes me places as I cannot drive due to medical conditions.

In January 2022 I finally applied for a Blue Badge and paid the £10 fee. There have been delays with the entire process but the website said 4-6 weeks before I'd be told what was happening next. After 12 weeks I was told on the phone that one month earlier it was written on my file that I needed an assessment and that they would chase it up so a letter would come out. I didn't get a letter until June, for a July assessment. So it took 6 months in the end. I am not eligible for automatic approval of a Blue Badge as I have invisible illnesses that can vary person-to-person, day-to-day. If you do get Personal Independence Payments for mobility you should be approved for a Blue Badge.

I was assessed by a Physiotherapist under Liverpool City Council and I felt at ease as soon as I got there. We parked in the allocated parking area for Blue Badge assessments and I used my wheelchair to get into the temporary building they have attached. We had a quick chat as he already knew what Ehlers-Danlos Syndrome, Postural Tachycardia Syndrome and Fibromyalgia were and how they varied. I had already seen online what was useful to bring ahead so the Physio took the plastic wallet that I had brought. This contained an up-to-date prescription, my letter for the assessment and a letter from my GP. My GP had already written a letter that I submitted along with my application but after a later telephone appointment she felt like it would be beneficial to have a more recent one, outlining my different mobility needs and that I am completely dependent on others to get out and about. I don't think I have been out on my own since 2015 for reference.

The Physio told me that we would do a quick walking assessment out in the car park and I was to walk from one side of the small car park to the other and he would walk with me and chat. He asked my partner to walk behind us while pushing the wheelchair in case I needed to stop or rest. He had a stopwatch open on his phone and I slowly got up and used my walking stick to balance myself. I went down the ramp slowly, and he advised me to use the railing and my stick so I had the most balance. He asked me questions (nicely) as I was going down the short ramp very slowly. Once I had reached the bottom I swapped my walking stick into my other hand and immediately lost balance, and my right hand now free began to shake, like a tremor movement. I was more unstable walking and didn't really get that far before he stopped the clock and said I could get back into my wheelchair and we would go back into the room to chat.

Given that I didn't make it to the first wall I am assuming he stopped due to taking a long time and my walking being unstable. At the start, he said that there was a second stage and that we would do it after the walking assessment but he didn't mention it once we got back into the room. He had already scanned in my GP letter and I was advised that I look into various avenues to help me walk a bit better. He didn't undermine me once or imply that I could be fixed. He recommended private Physiotherapy or Hydrotherapy but this isn't an option for me, unfortunately. He said a rollator may be a good option to build me up to walking a bit more where I can take a break and I agreed. Overall he was lovely and said that he would write up his side of things and that it could be a week or two until I heard back.

We went back to the car and I was feeling positive but sometimes you have appointments where you have a good feeling afterwards but then you get a letter that ends up feeling completely negative. Anyway, before we even returned home which is about 15-20 minutes away, I had an email. It was from Blue Badge Digital Service with the title "Blue Badge Ordered". I was stunned. 10 minutes after we left I had been approved already? After speaking with some of my partner's close family we came to the consensus that the Physio said 1-2 weeks as that's what he says to everyone and had to fill in his side before I would definitely get approved. I clicked on the email and it said that the Blue Badge was ordered that day and it would take up to 10 working days for it to be delivered. I am writing this 5 working days out from the email so it could be next week before I receive it, but that is okay. The badge will expire in 2025, and I am so happy. I'm sure it was only 2019 before people with hidden disabilities could actually apply for a Blue Badge and with the pandemic, there have been a lot of delays. 

The main thing I will end up using the Blue Badge for is hospital appointments, to be honest, and it will help a lot with being able to find a quick space that's close to the entrances. It was always about the closer parking rather than the potential for free parking for me as when I am able to walk a bit, it will help me stay up for longer. It will help when travelling to meet up with my partner's family too when we meet up halfway. I'm just really thankful right now. Thankful to the lovely Physio who I think I struck gold with. Thankful that hidden disabilities are just beginning to get recognition from those in power. Thankful that my life will now be easier, as will my partner's as he has to assemble my chair every time I leave the car. I hope this helps anyone who has an assessment coming up.

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Things I've Learned In My 20's

I learned to love my curly hair

It was always brushed out as a kid and it was only when I was 12 and started doing my hair myself that I realised how curly my hair actually was. Prior to this I hated my hair and complained about how frizzy it was. When I saw for my own eyes how curly my hair was I was upset at how the curls were brushed out and plaited away like they didn't exist. I had my hair curly for a year or so before as a teen I felt the pressure to straighten or curl my hair with tongs. I then fried it for years including bleaching it and it kinda ruined it. Now that I'm in my late twenties I'm really trying to fix my hair and appreciate it. I'm trying to buy the best products for it and buy from black-owned businesses as they make the best products hands down. 
It's good to self-reflect As a teen, I was often on the defensive and I had a lot of hurt and anger inside of me. I said to myself whilst I was in University that I had to be true to myself, be an honest person and be kind. Now that does not mean I am perfect in any way. I try to reflect back on conversations and see what I'd change about them if they happened in the future. I make sure I apologise to people and explain why I think I've hurt them. I have done a lot of reading and I make sure that I protect myself by sticking with my boundaries but I'm also living the most honest life that is true to myself. I think it's a great thing to be able to critique yourself and try to be a better person.
I'm not responsible for other people's feelingsI am an empath and I often try to help people out. With that comes other people's emotions and I often carry them when I shouldn't. I have worried a lot about how other people feel when I should put myself first. I can live my life the way I want to and I am not responsible for how other people feel about it and I shouldn't carry the weight of their emotions.
Setting boundaries is keyIt's important that everyone has boundaries in different kinds of settings; work, school, relationships, family, friends etc. Boundaries are invisible barriers that we put up to protect ourselves and you can decide how strong a boundary is depending on the situation and whether people respect you and your boundaries or not. These boundaries help protect your mental health and can reduce the stress in your life. They can be rigid or flexible depending on the situation. I think it's one of the most important things you can do in life. One example for me is I've set a boundary in place with friends and family that I won't say yes to going out somewhere or doing something if I don't think my body (with chronic illnesses) can handle it, and they mustn't try to convince me things will be fine because I know my body best. One thing I've learned is that you should be consistent with your boundaries as it reinforces the original statement so it's clear what it is. Learning how to say no is great too. I have enjoyed reading this article about how to set up boundaries and this one about preserving boundaries.
You don't have to drink alcohol I thought when I was a teen that alcohol would be a really big thing in my life, but once I'd stopped partying during University I realised that I don't actually like it that much. I stopped going on nights out and only had the odd glass of wine or a cider in the pub or at Christmas. As time has gone on I've completely cut alcohol out of my life. It really urked me when people have joked about using drinks like wine as a coping mechanism or people making fun of those who don't drink as if they are 'boring'. I think a lot of Millenials like myself have come to similar conclusions. I don't have alcohol as part of my personality, I don't need it and in fact, it really messes up my medications too. You don't need alcohol to have fun. Don't give into peer pressure, and if your friends will only see you if you drink, you need to find some new friends. 
Actions speak louder than words, but words can tell you who a person really is I have learned over time that having people promise to do things doesn't always mean they will do it. I prefer people doing things then I can see it for myself. I prefer someone being a better person than promising to be a better person. But aside from actions, words can really show you who a person actually is. How someone treats a waiter or service staff is a prime example of what they're really like. If I had ever gone on a first date with someone I would go for a meal just for this reason. If they treat someone in retail really bad it shows you what they're like. If they volunteer to help someone in need it shows you what they're like. You can learn a lot about someone just from observing them. 
Listen to your bodyYou know if your body isn't feeling right, and advocating for yourself is really important. For me, getting diagnosed with multiple chronic illnesses took me speaking to myself and telling myself that I know my own body and if I don't fight for answers then I'll never get them. For some people, it's taken decades to get a diagnosis of Ehlers-Danlos Syndrome and I had to fight to get answers for myself. I've seen five medical professionals before I got my diagnosis. If you know that something with your body isn't right, I urge you to listen to it and try to get seen again if things still aren't right. 
Respect is earned, not given I really have never liked the saying 'respect your elders' as if anyone older than you can do no wrong and that you must never speak out against them. It's such a toxic thing, even if the original statement was never meant to be conceived that way. Respect for everyone must be earned, and if it isn't then you don't have to speak to them or even keep them in your life. If people do apologise for things they've done wrong, you can choose whether to accept it or not, but don't think that just because someone may apologise that you have to reconcile with them. This comes with respecting yourself and this is where setting boundaries comes into play. When someone shows you their true colours, believe them.
You can stop supporting people who upset youYou may think that this is just on a personal level, but it applies to anyone. A prime example of this is Sia, the singer. She made a movie about an autistic child and instead of hiring an autistic actor, she chose a creative person she is close to who she has chosen to do pretty much every project she's made since she met her. Included in the movie was a ton of autistic tropes, dangerous ways to manage meltdowns and much more. Instead of apologising, she set her fans onto autistic people on Twitter. She made a lot of comments about a mystery autistic actor she 'originally hired' was 'too hard to work with' and for help with her movie, she used an organisation that regularly really hurts autistic people. She doubled down, no, she tripled down. She refused to back down and upset a lot of people. Now I originally supported her as I liked her music, and when I found out that she had Ehlers-Danlos Syndrome I thought it was great that she was speaking about it to the public. Now I refused to listen to her music as it gives her royalties and don't recommend her to anyone. Also, the movie flopped.
I've learned a lot about the meat and dairy industryTwo years ago I went vegetarian, for a multitude of reasons. Now, I would like to go vegan, but medically it isn't possible for me right now. I have been told what I need to consume to keep my body as healthy as it can be and with a lot of intolerances there are some things I simply cannot swap out. When I can limit my animal by-products such as honey, milk, cheese etc I do so. Anyway, I have learned a lot about the meat and dairy industries that I find absolutely appalling. I went to watch Supersize Me 2 as when the first one came out I thought it was interesting, but I was not expecting to find out what I saw about baby chicks. I have learned about what farmers do with little calves and it hurts me to my core. When I was younger I was forced to eat things like turkey and lamb, and I'd try and get rid of it in any possible way as I hated it. I think I've always wanted to go vegetarian, I just had to wait until the time was right. I would urge anyone to consider reducing their meat and dairy intake even by just a little to help save animals and reduce the effect of climate change on our planet.
I've discovered who I amA while ago I did one of those Myers-Briggs personality tests to see what it said about me as a person. Surprise surprise I am what they called a Mediator. It said I was empathetic, open-minded, creative and passionate, but I'm also emotionally vulnerable, desperate to please and self-critical. Once seeing this for myself, I'm learning to balance these strengths and weaknesses out. I'm not trying to please people and I'm living my life for me, and I'm trying not to think just from the heart either. I've also had a bit of self-discovery when it comes to religion. I was christened and I wish I wasn't because although people say 'you can choose when you're older' I don't believe that originally christening them is giving them 100% of that choice. Anyway, I'm not a Christian or anything from that denomination and this has come from getting chronically ill. I really don't like the idea that prayer will make me get better. Why would a God give me an incurable set of illnesses? What did I do to deserve that? I just am done with religion. I've realised I am a Humanist which means I go with what science says and I go with ethics and empathy. I base my life choices on what I believe is good for me, what medically I should do and how my actions affect others.
Self-care is a mustTo reduce stress, love yourself and stay balanced, practising self-care is a must. This could be taking time out of your day to sit and listen to music, eat nutritious food or alternatively indulge in a treat. It could be to take a walk with a friend or to go to bed early. Importantly, this includes setting boundaries as I mentioned earlier. This also includes reducing the amount of negativity in your life. Unfollow negative people from social media, don't hang out with people who bring you down, turn down social events if people there hurt you. The more positivity you put into your life, hopefully, the more positive and happy you'll be.
A healthy relationship with your partner is keyI had a toxic relationship as a teen, with both parties going through the stress of family life, school and more. We were both toxic to each other. As an adult, I have learned from those mistakes and communicate openly with my partner. We take time to listen to each other, we help each other out and we make compromises. You need to find a partner with who you can have a healthy relationship with in order for it to blossom and last long. Consider who you share things withI can be way too trusting and it has come back to bite me before. I wouldn't trust every person you have close to you that they will keep a secret or personal information to themselves. I try not to tell too many people what is going on in my personal life, whether that's medical problems, interactions with family or friends, any disagreements etc. I keep things closer to my chest now and I'm less trusting. Things can be misconstrued and I've had people discussing my disability behind my back and it finding its way to me and I just don't need that negativity in my life.
Express yourself the way you truly want toFor years I have been dressing really boring so that I'm not too 'expressive' as it tends to get comments from people. I've had comments about dying my hair in different colours, but in reality, I was just having fun and expressing the creative part of my personality. My partner encouraged me to get my nostril and septum pierced because I'd wanted to for ages but I was concerned that people would make comments. What was surprising to me was that my Nan really liked them and said I suited them. I've been into tattoos and piercing ever since my Emo days from 2006 onwards. I'm now dressing how I want to and living my life that is true to who I am inside.
Live on your own timelineJust because there is a societal expectation to be married before 30 and start having kids doesn't mean you need to live by that timeline. You don't need to have found your dream job by 30, you don't need to have gotten married or thought about kids yet. Live by your own rules and take your time. Don't rush into things because other people say you should. I'm not working and I'm unsure about having kids and I've made my peace with that. Me and Andy only decided to get engaged because we were ready to, not because others expected us to.
You don't have to agree with people's beliefsOften I find that there are two main camps when it comes to beliefs. You have politics where there is the main party on the left and the main on the right. There is eating meat and not eating meat. There is being religious and not being religious. Often these topics have more than 2 opinions but there are often 2 main sides. I've learned that you don't have to agree with people's beliefs and you shouldn't try to convert people either. I am a strong left-leaner on politics who is vegetarian and non-religious. I don't try to convince people to leave what they believe in and believe in what I do. I expect the same from others too, but my main point is that you don't have to agree whether what they believe in is right or wrong. If a belief is too toxic to be around, say like someone believes in Eugenics, then it is perfectly reasonable for you to not be around the people who believe in it. You should be able to have conversations with people without these topics coming up...
Don't let people's mistakes dictate your own lifeI have been told before not to do things because someone older than me did that thing and they regretted it and it was a mistake. It can be perfectly reasonable things like going for a type of job, getting engaged, buying a car etc. Don't let other people's life choices dictate your own life. Just because you regretted getting married does not mean I will either. Every big decision you make is a chapter in your life story and everything you do you can learn from whether it's positive or negative.
Life is better when you don't care about what others thinkThis is possibly the hardest thing I have had to learn but boy is it the most gratifying thing once you've understood it. Life is so less stressful when you stop considering what people think of your choices whether it's outfits, holidays, where you live or what car you drive. I think this also comes with confidence too and I've had to learn that too. Obviously, there are some exceptions, like for say in a wedding. You should wear an outfit that matches the dress code and not wear white or whatever colour the bride may have forbidden. Honestly, don't ever wear white to a wedding, that is a huge exception to this rule. Aside from exceptions, make choices how you want to and stop considering how other people may perceive them. Live your authentic life.
Follow your gut instinctI truly believe that your gut can keep you safe. Like if you meet someone and get a weird vibe from them and go away from the situation then later learn that they are dangerous. Or you take a different road home and get a weird feeling in your stomach and turn round then later find out it was flooded. I think red flags can give us strange feelings and I don't know how to explain it but I now trust in my gut. I don't try to explain away something or ignore things that don't sit right with me. 

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Myths and Assumptions That Non-Disabled People Make About Disabilities

A disability in the UK is defined by the Equality Act 2010 as a physical or mental impairment that has a substantial and long-lasting effect on a person's regular carrying out of day-to-day activities. This means disabilities can include visible disabilities but also invisible ones such as Autism, chronic illnesses like Fibromyalgia, mental health conditions, and vision impairments. Some disabled people will have multiple disabilities both visible and invisible. There is a lot of stigma that comes with having a disability, such as stereotypes applied to us, people feeling like they cannot communicate with us, being left out and so much more. We are often discriminated against, whether that being in the form of ableist language and insults, businesses not providing access, not being believed in medical settings, and being left out of things like marketing campaigns. Misconceptions and myths need debunking, so I thought I'd write this post with a lot of them. If there is more to talk about I'll write a future post too.

Not that many people are disabled anyway so why listen to articles like this oneOne in five people in the UK have a disability or chronic illness. One in five. 20%. Scope breaks this down into a few categories, including 8% of children are disabled, 19% of working adults are disabled and 46% of pension age adults have a disability.

Person-first language is more polite and every disabled person prefers itFrom the disabled people I've had the pleasure to meet online, and my own personal preference, the consensus is that identity-first language is better. I am not a person with a disability, I am a disabled person. From what I've seen online, identity-first language is more common in the UK, with person-first language used more in the US. However, if you go on Twitter and speak to disabled people, a huge chunk of them will tell you they prefer identity-first language. I think sometimes it depends on the disability or chronic illness too. The preference depends on the setting, as workplaces and businesses may often use person-first language as they see it as more polite. Another example of language choice is not referring to people as 'suffering from X' or 'bound to X'.

It doesn't cost disabled people more to liveIt actually does, by a lot. Scope in 2019 found that it costs on average an extra £583 a month to have a disability. This includes things like paying for mobility aids, parking for hospital appointments, paying for physiotherapy, items in the house that make it more accessible for you. 20% of disabled people face costs of over £1000 a month. Considering a lot of disabled people have no welfare money coming in such as Universal Credit or Personal Independence Payments, this is a lot of money to conjure up. In my case, I have no welfare money and rely on my partner working in his full-time job. He gets no money for being my carer when he isn't at work. We have to miss out on so many things that others take for granted, such as going on holiday, eating out at restaurants, buying a new car (that would fit my wheelchair and aids in a lot better!), buying a bigger house, buying designer clothes and so much more. Even a good sofa is a no-go for us. We have an IKEA sofa which has already had to be replaced on warranty, we cannot afford to get a fancy sofa even from places like DFS. The pressure of trying to pay for bills and mobility aids is another reason why disabled people struggle to get into the workforce too.

It's okay to offer us solutions/curesI don't think under any circumstances it's okay for someone to try to 'fix' a disabled person. I think there can be things that can genuinely help symptoms for people, but on the whole, it's better to ask a person first. This could be as simple as 'is it okay for me to offer a suggestion that has helped me before?'. From experience, a lot of these cures/solutions/suggestions seem to be offered in a more passive-aggressive tone without genuine concern for the disabled person. Things that have been suggested to me before comprise of: trying yoga, trying pilates, walking, swimming, trying detox teas, getting a professional massage often (like I'm made of money), eating kale, sleeping better (like I haven't tried), essential oils, meditating and mindfulness, trying not to think about pain, drinking smoothies, resting and more. And people wonder why the cost of living is higher for disabled people if they're paying for a lot of these things and mobility aids and prescriptions. Needing to 'fix' us implies that you think we're broken. Everyday Feminism explains it perfectly; 'cure-focused narratives have deep roots in systemic ableism'. Treatments for us is a different matter, which can be things like physiotherapy, hydrotherapy, medications, surgeries and mobility aids. Emily Ladau puts it perfectly 'Those who are fighting hard to eliminate genetic disability should be fighting harder to change the world".

It's okay to park in a disabled bay if you don't have a blue badge, even if for a few minutesI can give a very quick answer to this and that is a huge no. Proportionately there are way more other parking spaces than there are disabled bays, so just use one of those. I don't even have a blue badge yet and this upsets me. It is rude and shows you don't care about disabled people.

Non-disabled people can't do anything to help disabled peopleNon-disabled can help us remove barriers that we face in a mostly-abled world. This can be through advocating for us for things like accessible tickets for concerts, pointing out ableism in public, supporting us to make changes online through things like petitions. By not using our aids like parking spaces and disabled toilets if you aren't disabled/chronically ill. Speaking out against ableist language from people, even if they're justifying it as a 'joke'. Even just opening a door and holding it for us. There are so many things you can do to help us that make take the smallest amount of time but could change a lot for us.

Wheelchairs are for paralysed people onlyIn the UK, out of the 1.2 million wheelchair users, approximately 33% of them are ambulatory wheelchair users and 8% of disabled people use a wheelchair at all. Wheelchairs offer independence to those who struggle to walk, struggle to stand up, are in pain when not using them or just do not have the energy to not be in a wheelchair. A lot of people get comments like 'someone else could be using that wheelchair and you're taking it away from them' which is ridiculous as some people like me own their own wheelchair (mine was donated to me). I think from my point of view, the funniest thing from me using my wheelchair was when I wiggled my legs and a lady looked at me in horror, like she assumed I was paralysed. Another comment is about being too young to be in a wheelchair. How do those people explain disabled children needing wheelchairs or elderly people who are fit and well who doesn't need them? There isn't an age limit on disabilities. I have Ehlers-Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome which means my joints can dislocate and I can faint from standing. In what world do people think it's safe for me to be walking around a shop or a park if I don't feel able to? It puts me at risk of injury.

We all have really strong painkillers like opiates to manage painYou may actually be surprised to hear that even the strongest painkillers sometimes do not take all of the pain away. Some people are not on any painkillers as everything they've tried doesn't work. Even if people are on strong painkillers, so what? A lot of chronic illness and disabled people struggle even getting some form of pain management as they're wrongly mislabelled as 'drug seekers'. Medication is a personal and complex topic and probably shouldn't be asked about unless you are that person's GP.

Disabled people can't/shouldn't have childrenThis is a classic example of Eugenics. This is defined as 'practices that aim to improve the genetic quality of the human population' and was used by the Nazis in the 1930's and 1940's for example. In that time, there was forced sterilisation of disabled people in order to make 'the best humans in the future'. It has been used to try to justify human rights abuses and despite it being widely known as a horrific thing, so many people still think disabled people should not be allowed to have children. I think people forget that you can become disabled at any point in your life, whether that be from developing a post-viral illness or being in an accident. The most important thing I can think of is 'why are other people concerned about whether we have children?'. Why does it matter to them? Whether disabled people can't have children is their personal circumstances and their medical information should not be shared with us unless the person wants to. Nobody should be concerned about whether disabled people reproduce unless you are that person.

It's obvious when someone has a disabilitySo many people have what we call invisible disabilities which are conditions that aren't apparent to the naked eye. Say for example you see a broken leg, you know that person has a temporary physical disability. If someone has joint pain, you often cannot see it, therefore it's 'invisible'. This is also apparent for mental health conditions and for Neurodiversity too.

Wheelchairs are the only mobility aid neededNope. Here are some examples of mobility/accessibility aids: wheelchair, crutches, walking stick, orthotics, walker/rollator, modified eating utensils, modified writing utensils, grabbers, grab rails, doorknob adaptors, modified sleeping surfaces, tetrapods/tripods, hearing aids, visual aids, braille menus, assistive computer technology, compression stockings, artificial limbs, feeding tubes, catheters, adaptive kitchen technology like kettles and tin openers, shower stools, hoists, toilet frames, bed levers, assistance dogs, electric mobility scooters, lifts, char lifts, eye-tracking systems, plastic straws, reminder systems, bed/chair tables, clothing aids, canes, keyboards, splints, braces and supports, ramps, fidget toys, automatic doors, and so much more.
We all have a blue badge The Blue Badge enables disabled passengers and drivers to park as close to their destination as physically possible. It costs up to £10 in England, £20 in Scotland and is free in Wales. They usually last around 3 years and you have to reapply for it before it expires. On the application I would check 'I have a permanent disability or condition that isn't expected to improve for at least 3 years'. This is where some of the problems lie, as some medical professionals have the viewpoint that if you exercise and lose weight you can manage conditions well which is not the case at all. If the medical professional doesn't really know about your conditions at all, it can be difficult to prove otherwise. When applying you can use supporting evidence, which is often a letter from a professional and PIP award. For me, I will have to contact my GP to ask for a letter and plead for them to say I won't 'get better' or improve, and I also I don't have PIP right now. When it comes down to having a Blue Badge, you have access problems gaining it, a financial cost, and the need to prove your disability. It isn't always easy.

We all claim Personal Independence Payments (PIP)Like above, a lot of us don't claim PIP. Sometimes because the access isn't there in the first place to aid in filling out the forms and going to the assessment. Sometimes this is because the mental stress of filling them out and being assessed is way too much. Other times it may be because we don't have enough evidence despite living daily with our disabilities. Since the Government switched from DLA to PIP it has become so hard for disabled people to claim welfare payments. Often people have to go to tribunal to appeal the decision before they're awarded. Think about how much time, effort, mental energy, and sometimes money would go into that. I still haven't applied as I've been waiting for more diagnoses to provide as evidence. It's really tough, and you can be awarded as little as £20-something per week to live on, which is almost nothing.

It's okay to pray for usWithout permission from the disabled person, I don't think it's ever okay to pray for us. For me, it's a hard no. I don't belong to a religion and identify as a Humanist which means that I think about ethical decision-making and science. Before this, I didn't ever personally identify as belonging to a religion when I have been able to think for myself. Aside from this, are you praying that your God will fix us? Because the whole religion and disability topic is complex in itself. The Mighty have spoken about this before, as even strangers sometimes approach disabled people to pray for them. Are they trying to pray it away? People may refuse and the religious person will still try and pray for them. Or, they may refuse, they go back home and they pray for them there. Consent in every context should be taken seriously. The only people who have ever offered to pray for me have been Christians/Catholics so I can only really offer that side of the story but it feels 'off' to me. You don't see us as people, you see us as broken beings who need a miracle to make us into a proper person.

You can be too young to have disabilitiesYou can be born with disabilities, or become disabled as a child, teenager, or young adult, just like you could as an adult or elderly person. This myth is really harmful, as it encourages people not to believe what disabled people are saying if they're of a certain age or they look younger. The thing that gets me most is when older people believe this myth. There are mostly two categories of people who stare at me when I'm in my wheelchair; kids who are just curious, confused, or otherwise, and elderly people. The people who have glared at me most are the latter and I think it's because there is this false assumption that if you're not over a certain age you should be up and exercising, not wheeling around or using mobility aids. In the education system and in the media there should be way more education around disabilities to prevent these assumptions from happening. I've been teaching my 9-year-old sister about disabilities and ableism and from what she's said, she is more respectful and eager to help disabled people now that she is free from certain assumptions.

Disabled people can't be independentThis comes across to me as an uneducated and rude assumption, to be honest. Why can't they be independent? Why does it matter to you if we aren't independent? There are plenty of independent disabled people and plenty who need care. I'm not sure why this matters. Sometimes when out people will talk to the person who is with the disabled person, as if we can't talk for ourselves. This is awful and patronising. We are our own our person and should be treated the same as everyone else.

Disabled people should all be trying out for the ParalympicsI don't understand where this comes from. A lot of people have one of two mentalities; the first that we are all 'mega' disabled and have carers and loads of welfare money and we cannot do anything for ourselves, or, that we could be amazing Paralympic athletes and we just need to put our minds to it. What? So many people with disabilities live in unbearable pain, or they require access aids to help them do daily tasks. Let's maybe not encourage people to be athletes unless they express interest in it.

We all have carers or family that look after usAbsolutely not. Some people have neither, some people have one or both. I am lucky that my partner is my carer, but that is only because he cares for me outside of work. During his working hours, I am left alone and it is often difficult for me. Should my condition get worse we will have to look for a carer but we cannot afford one. Care in the UK is underfunded, unsupportive, and frankly not good enough. The Government does not care about disabilities (source: see their voting history). I think with the family route, some people are single and they are estranged from their families, or their close members have passed away. I would be super wary of asking people what their care situation was like unless you were able to offer a viable solution for them.

We refuse to get a job and use disabilities as an excuse4.4 million disabled people are in work, which out of 14.1 million disabled people is a good chunk of people, especially considering you have children, retirement-age people and people with severe disabilities that prevent them from working are in this number. Many people do work with their disabilities as the statistics above show, but there are many barriers that disabled people face. Scope outlined that if 1 million more disabled people were in the workplace and supported there too, the economy would fact a boost of £45 million. A lot of disabled people want a job, but can't access jobs, or a discriminated against in job interviews. Fun fact, you don't have to disclose your disability to anyone. But facing support is a difficulty. Ways in which the workplace can support disabled people may be allowing remote work, providing lifts and disabled toilets, providing disabled parking bays, modifying hours, software licenses, and much more. Many employers think providing access is too hard, or they're worried they'll get it wrong. According to Huffington Post, the reasonable adjustment could cost just £30. The UK Government's Access to Work can even help employers cover these costs. For some, it's not the job itself but the transport. For me, with reasonable adjustments, I could work an office job providing I had plenty of smaller breaks and other things, but I cannot get to a job. I don't have a car and will not be able to drive now (see my POTS post here) so I would have to rely on public transport. Taxis can be an issue with bringing mobility aids, buses only have one disabled bay and often prove difficult when standing for a bus. Trains are tricky as often if you're using a wheelchair you have to book access help over 24 hours in advance which is ludicrous and sometimes the people don't even turn up to help you onto the train. Often on trains, those disabled bays are filled with bicycles and suitcases too. I can't cycle due to the pain it puts me in, I learned the hard way when I went to Center Parcs. Obviously, if I'm not allowed a driving license I can't use a motorcycle, not that I could afford it anyway. Walking a long distance (we're talking over 5 minutes) is a no-go. So where do we stand? For me, freelance work and working on this blog is the only option I have left.

Businesses don't need to provide access to disabled people1 in 5 people have a disability, that's 20% of your potential customer base alienated if you refuse to provide access. According to The Ramp People, if access was provided it could bring in £249 billion a year. The Equality Act 2010 should be reformed to make more businesses provide accessibility but right now it's down to the business themselves. Access can be in these forms: Alternative menus including large font, different coloured paper, and braille, ramps up to doors, automatic button doors, disabled toilets, changing spaces toilets, no flashing lights or strobe lighting, a quiet room for sensory purposes, moveable chairs to allow wheelchairs to take their space, access listed on your website/Google Maps, lifts, wider stairs, handrails, multiple disabled parking bays, employees trained in basic British Sign Language, space wide enough for wheelchairs to manoeuvre, no chairs/tables/signs blocking the pavement outside, dropped curbs, adequate signs, low background music, and accessible checkout desks and reception areas. According to Purple, businesses miss out on £2bn every month if disabled people cannot access their services or shop. 

Whatever the medical professional has said is always right and we can't know more about our conditionsIf you've not seen the meme 'Don't confuse your Google search with my 6-year degree and medical school' then you may not have seen the response from the disability/chronic illness community. The response is 'Don't confuse the one-hour lecture you had on my condition with my X years of living with it'. It's true though. I have had to explain my hEDS condition to almost every medical professional I've had. The only person who knew about it was my Cardiologist. Even with POTS, I just said 'dysautonomia' to my Neurologist because so many people have no idea about these conditions. Obviously, there are exceptions here; there are specialists in those conditions, some professionals have the conditions themselves or some are keen on learning more about conditions and will know a lot about them. Sometimes you will have medical professionals who don't know about your condition but will read up on it and learn more before your next appointment. But the whole 'don't Google anything' mentality is damaging and dangerous. How many people will have symptoms, search about them and realise it's more urgent than they thought and seek medical treatment that can save their lives? My bet is more than you may think. I have Googled the whole way through seeking multiple diagnoses because I had no idea what I might have been facing. I had joint pain and the only thing I knew of was Arthritis, which from tests I do not have because I don't have inflammation of the joints. I knew from my first misdiagnosis that it wasn't as simple as 'you're bendy', Googled it, researched it and went back with more knowledge, and advocated for better care, and it completely paid off.

You don't really become disabled later on in lifeOften we are asked "were you born like that" which 1. you shouldn't be asking that, if you're intrigued about someone's disability there are far better ways to start a conversation, and 2. why can't you ask 'do you need any help' or 'how are you getting on', not questioning our disability. This is a multi-part question regardless. A lot of elderly people become less mobile and would class themselves as disabled. There are plenty of instances of people either being born with their disability or becoming disabled at any point in their lives. Genes can kick in with things like puberty or menopause, accidents happen, you can be born with a genetic condition that gets worse as you get older, things like viruses can leave you with disabilities. Also, mental health conditions and Neurodivergent conditions like Autism, ADHD, etc are all classed as disabilities if it affects your daily life. You may not know you have one of these until you seek medical help. Anyone can become disabled.

We're brave for living with our disabilitiesThis one is right in the 'inspiration porn' area. The reason disabled people don't like it when they say they're 'inspired' by us is because it's often used when we're just doing our daily tasks. Non-disabled's expectations for us are nearly touching the floor they're that low, so if we do anything independently it's often mentioned about us being brave. Stella Young said in 2012 "what did they inspire me to do?" and I think that's a great quote. If we put our shoes on ourselves, are you now inspired to put yours on yourself? No? Exactly. It's so patronising.

It's fine to use wheelchair-boundThis ableist language is not okay for a few reasons. The first is that for those who need a wheelchair, it's an extension of the legs themselves. Non-disabled or abled people can get around using their legs, so for us our wheelchair is the equivalent. That's why it isn't okay to push us without asking or to store your bags on our wheelchair without asking permission. Also, why are we 'bound' to one? Many wheelchair users are ambulatory wheelchair users anyway but many people who are not will transfer to a sofa, a bed, a chair. They do not stay in their wheelchair 24 hours a day.

Disabled toilets are for wheelchair users onlyThis is a common misconception. Some disabled toilets have now changed their imagery to include things like walking sticks and invisible disabilities. If you are genuinely disabled, that toilet is for you. If you're using it to skip a queue or otherwise, that is not for you. But on the topic of wheelchairs, a good percentage of wheelchair users are ambulatory, meaning they can either walk, stand, or take a few steps.

Once you become disabled you are disabled foreverFalse, conditions like cancer and other life-threatening conditions can be covered within the Equality Act 2010 from diagnosis until you're recovered. You may have a condition that when treated or medicated well, you don't consider yourself disabled anymore. Some conditions are untreatable or incurable, however.

We should use nicer language, like 'differently-abled' instead

As #EDI member at my workplace,
we adopted the #Socialmodelofdisability. It proposes that what makes someone #disabled is not their medical condition, but the attitudes & structures of society.
It's been suggested instead use "different ability"
Which do you prefer?
Please RT

— ⚰ Kaylo ⚰ (she/her) (@Marmitelover88) March 5, 2021

I saw an article on Medium about why we shouldn't be scared of the word disabled and substitutes just should not be used and I completely agree. Creating other labels is an attempt by some to make it 'nicer' for us but it actually does the opposite. Other labels include 'special', 'challenged', 'handicapable', If someone were to call me by one of these disability euphemisms, I would ask them what my other abilities are, or am I special like a magical being? Because these words are just terms for 'different' or 'not normal'. Disabled is the appropriate word to use. The euphemisms are infantilising and if they're used with children it will be frustrating for them to have to switch labels when they turn into a teen/adult. Disability rights activist Lawrence Carter-Long created the hashtag #SayTheWord to advocate for everyone using the word disabled instead of euphemisms. When it comes to using language around disabilities, the National Center on Disability and Journalism has a create dictionary online that you can use to see what is appropriate, although it does advocate for person-first language completely so take it with a grain of salt. The NHS has a language guide here too.

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Being Diagnosed with Postural Orthostatic Tachycardia Syndrome

I thought this day may have never come, but I finally have my POTS diagnosis. I'll explain a bit about what POTS is first, then I'll chat about how I got my diagnosis and the time frame too. 

Postural Orthostatic Tachycardia Syndrome (POTS) is an 'abnormal response by the autonomic nervous system to upright posture'. It means when someone with POTS stands up, different symptoms can occur but this will usually be dizziness (pre-syncope), syncope (fainting), fatigue, nausea, brain fog, temperature dysregulation, palpitations and headaches. Other symptoms can include cognitive impairment, excessively rapid gastric emptying, chronic headaches, tremulousness, sleep abnormalities, orthostatic intolerance, anxiety, visual problems, chest pain, blood pooling resulting in purplish discolouration and bladder problems. There are a number of causes of POTS, but I have what's known as secondary POTS because I have it as a comorbidity to my Ehlers-Danlos Syndrome (EDS), specifically the Hypermobility type.

Things that can worsen POTS are things like excess heat, standing up quickly, dehydration, menstrual periods, the time of day (worse in the mornings), alcohol, eating, and more. There are different ways for POTS to be diagnosed and this will depend on which country you live in and the preferred method of the medical professional. For me, I started off with a GP appointment in December 2019, and my lovely GP referred me to the Cardiology unit in the local hospital. Around January/February 2020 I had an appointment in Cardiology for me to go over my symptoms and I briefly mentioned my EDS and the Cardiologist there said it's common with POTS. I had a series of tests there before I had other appointments such as 24-hour ECG, 12-lead ECG, blood tests, and an Echocardiogram (ultrasound of the heart). 2 years prior I had already had 2 ECG's and one 24-hour blood pressure monitoring. In September 2020 I had a phone consultation with a different Cardiologist, and he said he would chase up on my Tilt-Table Test. This is where you lay flat on a bed that has a footplate (so you lie from the bottom up with your feet at the very end of the bed which felt weird for someone who is 5ft 4") and you are monitored constantly via blood pressure and heart rate. The two female medical staff were lovely but told me they couldn't have conversations with me once the test had begun as it can be distracted and can affect your results. They tilted the bed up (head up) 60-90 degrees (source: BHF) and they dimmed the lights. You stay like this for 20-45 minutes. For me, the test was cut short at maybe 10 minutes as I blacked out and lost consciousness (which is what they're looking for really). If you don't faint, they can give you a glyceryl trinitrate spray to see if it accelerates your symptoms to observe whether you will get dizzy or faint. I was so worried that they wouldn't have the results they needed that I was willing to start it again! I've attached my Instagram post below from my chronic illness account that I wrote directly after it.

View this post on Instagram

A post shared by Lau 👩🏼‍🦽🦓✨ (@chronically.lau)

Although POTS was first recognised in medical journals in 1993, a lot of medical professionals still have no clue what it is. It's really hard to prove you can faint unless you do faint, so having a written diagnosis is completely worth it. I felt like it took a lot of advocating on my part and being vocal with what treatment I'd like. Basically, from the September 2020 appointment, I was prescribed Bisoprolol which is Beta Blocker that slows down your heart rate and makes it easier for the blood to get around your body. Since getting my diagnosis, my Bisoprolol has doubled so I take one in the morning and one in the evening. Since December 2019 I've also been taking Ramipril which lowers your blood pressure and helps the blood get around the body. They both seem to work well for me and I'm very grateful that they have both reduced my palpitations and chilled my heart out a bit. I have also been 'prescribed' a high salt diet of 10g a day. The NHS recommends for most of the population the intake of salt is no more than 6g a day. The only other things to help are: making sure you don't stand up too quick, wear compression clothing to stop blood pooling, when standing crossing your legs and standing in different positions, drink plenty of fluids, avoiding long periods of standing, and reducing caffeine intake. Exercise is suggested, similarly to EDS, but I find this difficult. I get extreme headaches, cannot do fast exercises like HIT, things like using a cross-trainer make me incredibly dizzy, and things like swimming set off my Fibromyalgia. The best things I can do it using a rowing machine which I don't have, nor a gym pass, gentle stretches, and when I'm up to it, going on short walks. 

I'm really glad that I've finally got my POTS diagnosis as it explains so many of my symptoms and has enabled me to get the treatment I need, particularly helping to lessen the heart palpitations and regular spells of dizziness I've been experiencing. If you are also going through the process of getting a POTS diagnosis or are experiencing symptoms that you are not sure about, then my advice would be to keep going, record your symptoms and do some research around POTS so when you speak with your GP you have a better understanding yourself which should help to explain what you are experiencing. If you ever have any questions you'd like to ask about POTS or other health issues then feel free to tweet me.

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AD | Disabled Dating Ideas

It's been a few years since I started to go through the process of appointments and referrals after developing more symptoms that were impacting my daily life. Fast forward to now and I've been diagnosed with Ehlers-Danlos Syndrome and Fibromyalgia as well on some ongoing investigations for Postural Orthostatic Tachycardia Syndrome and migraines. Having a disability is something that you have to take into account when it comes to doing any activities as there are often considerations you need to make to ensure you can have a safe, enjoyable, and accessible time. There are many things to take into account when looking at accessibility which will vary for different people, but there are a few that I have experienced when going out, sometimes this involves me using a wheelchair or crutches. Travelling and accessing a location gives a few things to consider such as; whether parking is close, the condition of paved areas (particularly for those using a mobility device), if there are ramps for any stepped entrances as well as handrails and lifts being available. Having disabled toilets that are easily accessible are very important as this is often the only type of toilet that can be used by people with disabilities for a variety of reasons. 

The seating arrangements inside venues are also important to ensure they will be comfortable and have enough space to get wheelchairs and other mobility aids through between the tables - this is something I have had issues with previously at a few places. Ensuring places are well lit can often be important, as well as checking if there is any lighting that could cause issues - one I have issues with is strobe lighting as this can trigger migraines for me. How loud somewhere is can affect those that are deaf or hard of hearing or have sensory processing issues so making sure it's either not too loud or has quiet areas will be important. Accessible reading materials such as menus will be needed for those who need larger print, different coloured paper, or braille versions so venues providing these is important to ensure people who are blind, partially sighted or have disorders such as dyslexia are able to still read them. Single Disabled is a disabled dating site that has put together a video on their YouTube channel called 'Date Night Ideas For Blind People' to help you find something suitable. Their channel is going to focus on a range of disabilities in detail with the content to be uploaded, to help people with different disabilities find a dating option that works for them.

When it comes to dating when either you, your date or both of you are disabled or have a chronic illness, there are a whole host of things that you can do that could still be accessible and mean that you can have a great time. Due to the ongoing current situation we all find ourselves in, many of us have been making use of video calling to keep in touch with our friends and family. This is also a great option to use now and in the future, for a date, as you can do this from the comfort of your own home by using your tech to suit your accessibility needs. It can also be used as a good backup for those days when you have planned to meet up in person but your conditions have flared up which means that's not possible anymore. For when the world has returned to normality and it's safe to be out and about doing things again there are a number of things I can think of that could suit a good date idea. Going to the zoo or an aquarium has plenty of things to see and do that will give you and your date plenty to talk about. They are often well-paved/floored and have plenty of guides as well as having websites that will normally have information about accessibility so you can easily check before you go. Museums and art galleries can often be more accessible with larger spaces to get around and normally have some type of guide which can include 'talking guides' that you can carry around with you or larger print/braille guides with the information in. Going to a pub quiz can be a fun and interesting option as it gives you something to talk about during your date and can be a nice informal way to get to know someone.

If you fancied doing something a little more intimate or quiet, going for a walk in a park, if possible for you and your date, can be relaxing and be a great way to chat without facing them all of the time or eating in front of each other. If you didn't mind having some food together but aren't ready for a more formal meal, you could also couple a walk in the park with having a picnic as a cute and relaxing way to meet up and enjoy each others company. Another food-related idea would be to make a meal together if you both enjoy cooking as you can work together on something and means you don't have the nervousness of meeting in the middle of a restaurant with lots of other people around. You could also watch a film or TV show together or play video or board games depending on what you are both into. Going to watch the sunset and stargazing could be something romantic you went to do either as an activity on its own or one that you do to finish off a date. It would be relaxing and allow you to chat about things without anything else interfering. Sharing an interest in reading can be something to bond over and doing a book club between the two of you should give you plenty to chat about while discussing a book you are both reading. This has different options for talking about the book as it could be done virtually on a video call/phonecall, at a cafe or similar, or meeting at each other's place.

Other options that can be date opportunities include bowling, art classes, or bird watching depending on what type of activity you are able to do and have an interest in. When you have a disability or chronic illness, dating can become a little more complicated and can often mean that you can't travel as far to meet people for a date. There is a big range of disabilities that affect people in different ways so finding a date that is more tailored to your circumstances is important. Single Disabled is an online dating service designed to help those with a disability find a date local to them, and they have different options such as deaf dating and amputee dating on their website to help those looking for something more specific to find someone that matches what they would like. 

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2020 Is Approaching Us, So What Have I Achieved In The Last Decade?

At the beginning of 2010 I was 16 and about to finish the last 6 months of GCSE exams. I'd already moved to my Dad's house, had my appendix out, started a relationship with a boy I liked and mourned several people from my family in just a few close years. When I opened my exam results I was nervous, but I achieved a double A* in ICT, A's in Science, Religious Studies and Child Development, B's in English Literature, English Language and History, and C's is Spanish and Maths. At this point, I'd already decided that for my A-Levels I would choose History, Sociology and Psychology with an AS Level in English Literature. Throughout the next two years of studying those topics my baby sister Sofia was born and she is honestly the light of my life, my little best mate and she is a joy to be around. She's just turned 8 and it just shows how fast the years have gone by. I started going out drinking and had an amazing time with friends. I applied to study Law at Northumbria University and was accepted when I achieved an A in Sociology, a B in History and Psychology and a C in General Studies in my A-Levels.

I moved up to Newcastle and still managed to communicate with my little sister despite being 3 hours away from her. I met my flatmates and for the next year, they were all great friends. The closest person I became friends with was Andy, and we used to sit and watch TV together every time we couldn't be bothered to go on a night out. By two months in I knew he was someone I highly valued and was an all-round lovely person. Not long after the next semester started I ended things with boyfriend and a few months later ended up dating Andy. In our third year of uni, we got our own flat together and it tested our relationship, especially while both doing dissertations and end of year exams but it showed our strengths far more than weaknesses. We both graduated in July of 2015 and moved to my Dad's the next month.

During my uni experience, I began to develop pains in my body and couldn't decide whether it was in muscles or bones. I don't know why it had to be just one of the two but it turned out it was both plus nerve pain. After a lot of pushing to see a rheumatologist I finally was able to go and a doctor said I had Benign Joint Hypermobility Syndrome. This was an out of date term for Joint Hypermobility Syndrome but regardless I wasn't listened to properly and ended up back in the same hospital for another opinion eight months later. This doctor formally diagnosed me with Fibromyalgia and only verbally diagnosed me with Ehlers-Danlos Syndrome. I only found out it wasn't on my medical notes when I had a letter through the post that didn't mention it at all which only enraged me. It took until April 2018 for me to have it confirmed by a doctor and added to my medical notes. It took 4 years, which isn't even 'that' long in regards to being diagnosed with this condition. All in all, I've now been experiencing pain (I did have pain with EDS before but it was nowhere near as extreme) for over 6 years now. 

An achievement that really should be highlighted is starting this blog. It began in February 2014 so we're coming up to the 6 year anniversary in a few months. I've worked with many amazing brands and PRs and although sometimes it's hard to keep up when you're in pain, I'm so thankful I can post when I can and some brands are understanding of this. I've managed to review hotels and restaurants, share my experiences of living in Liverpool and Newcastle, share holidays with people and review a lot of makeup and skincare. I'm really grateful for the opportunities I get.

Since graduating, we went to Los Angeles together as I won a competition to go which gave us a range of emotions and experiences and we'd definitely go back again. We saved up for years and finally last year we were able to buy our first home. Aside from leaving the kitchen cupboards in their place and painting them, we fitted new worktops, tiled the walls, plumbed in a new sink, changed the flooring and the result went from a dark scratched up kitchen to a bright white and grey one. We also fitted laminate flooring in four rooms of the house, dug up a fair bit of the garden, daringly painted our living room navy blue and so much more. That was a whirlwind of four months of renovation and it was so worth it. We made the decision to not have a TV in our bedroom too, to allow us to have a better nights sleep and that was another great decision for us both. Instead of having a dining room we have a creative space and beauty area room that stopped us cluttering up other rooms. Our house is our safe space and right now I don't even want to think about moving at some point.

I suppose the last big achievement for me was deciding to get married. In December 2017 Andy popped the question on a trip to Newcastle to visit for the first time since leaving. It was absolutely freezing! A year later we booked our wedding in, so in the first half of 2020, we will be getting married. Obviously, we have had to split the money between the house and the wedding, with the house being a priority, but 2020 felt about the right time for us. Not everything is sorted yet but we are most of the way there and glad we've made the majority of the decisions by ourselves. I will share a lot of the process and things like the invitation and the dress post-wedding and I'm looking forward to that too.

For things I'd like to achieve in the next decade, there's only a few things I'm certain will happen. The first will be to get our own dog. Our family dog Charlie lives with my Dad and has just turned 12 but I do miss having a dog in the house. I do think we will eventually move house in the next decade, partially for another project to work on as we love renovating, but also for a bit more space. I have my fingers crossed that I'll continue to work from home on blog things and move properly into freelance work too. We are hoping to have our honeymoon in Disneyworld in Florida but it really depends on money. We are thinking about having a 'minimoon' not long after the wedding so that if we don't get to have our dream honeymoon then at least we can have a little holiday to have a break. Aside from that, I'm not really sure what will happen. 

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