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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Q&A With My Partner: What It's Like Being My Carer

When do you think your role as my carer really began?

I think it was around the time I noticed you were struggling with pain and mobility a few years ago as it was becoming clear that you needed a hand with certain things, even if these were small things that I could do that would make a big difference to you. 

How do you feel like you manage your workload working a full-time job and looking after me too?

I think generally I have got quite good at doing both of them successfully. I'm able to work effectively in my job and help and care for you around this and when I'm home. For the times when I'm in work, I will plan ahead to anticipate what you might need during the day to prepare this for you, such as making sure your meds are available and anything you need is easily accessible for you. 

What does looking after me involve from your perspective?

Sometimes it's hard to separate what would come under 'carer' activities and what is just the things anyone would do for their partner. Some of the things are small things like I've already mentioned such as making sure your meds/food/drinks are prepared, along with ensuring you remember to take your meds at the correct times. I also need to give you a hand or be available when you get a shower/bath due to the risk of you fainting being a lot higher. The other main activity I would say comes under a carer is helping you get around when we go out somewhere, whether this is supporting you when needed if you are walking or pushing you if you need to go in your wheelchair.

Is there anything you've learned from being a carer?

Being a carer will be different for each person doing it and the person that they are caring for and some of the things that you help them with are often not a huge task. Many of the things are a straightforward and easy task for someone such as myself who is not disabled, but they can make a huge difference for those receiving your care. These small things that you do can have a real impact on the persons quality of life and help ensure they are able to do things that they would not necessarily have been able to otherwise.

Has it changed our relationship since you've been my carer as well as my partner?

I think because were have always been very close and enjoyed spending time with each other, along with always being very good friends from the get-go, I don't feel like things have changed drastically. As your conditions have developed over time it has been more a case of adapting as we go rather than things changing overnight. We are still able to do the things we enjoy, some of these have just been adapted. I would say that we have become a lot stronger over the years as a result of me being your carer and you going through a lot.

Do you wish you were able to pay for someone else to come in and be my carer?

In one way it would be great if you were able to have more care if you needed it and able to be taken out if you needed to. But on the other hand, we seem to have a good way of managing it and organising things at the moment but obviously, things may change in the future when there may be more of a need to have someone else come in and help you.

What are the negatives of being a carer?

I think sometimes people see me as your carer first rather than your partner and just immediately think that I must only be your carer and that's it. I have noticed that you sometimes see people judging the situation without knowing anything about it. 

Do you think carers are acknowledged enough by the government?

I think it's hard that a lot of carers are not recognised and given any financial support by the government that would make helping and caring some someone a bit easier and could help to provide things that would improve the quality of life for the person they are caring for, such as certain adaptions.

Do you regret not having a more private relationship between us, since there is absolutely no privacy between us now?

As we've always been open with each other about everything I don't feel like it has changed that much and it really doesn't bother me. I know that I help you with certain things now and know a lot of information about your medical conditions, but I'd rather have it this way as it means I can support you more effectively. I'd also there be less privacy and be able to help you with anything you might need rather than keep certain things private and then you have to struggle on your own. 

What is frustrating for you being a carer?

It's annoying how difficult it can sometimes be for me to get carer access to places when we visit. We've had to purchase a few different cards to 'prove' that you are disabled and that I'm a carer in order to allow me to get into a venue as your carer. Some venues, such as concert venues, don't make it easy if you need accessible tickets. I remember when trying to get tickets for a concert, I just had to ring up the general booking line even though there were only specific seating that we were able to get tickets for. Other venues have their own dedicated accessible booking lines which are much better so I know it can work - I just feel not all venues are considerate enough for those who have additional needs.

From experiences pre-covid, when going on days out, what have you witnessed that has shocked you?

One of the things I have noticed is the number of people that stare at your when you need to use a mobility aid, especially when you are in your wheelchair. I understand that younger children may stare as they are not used to seeing people in wheelchairs so they may just be curious, however, for anyone else, there is no excuse to stare. I understand you may glance over but people I have seen look at your for a considerable amount of time.

What is it like having to speak for me sometimes?

I don't mind ever having to talk for you as I know it can be difficult for you sometimes. I've seen it a number of times when you have been trying to explain something for yourself and people don't take you seriously and I'm more than happy to speak up and advocate for you to reinforce what you are saying, such as needing considerations for something we are doing.

Do you feel like you've become a disability advocate yourself?

Definitely. I have noticed that I became much more aware of things and feel I will take more things into account realising how it could affect disabled people. I think that my mindset has changed and I will always try and look at things considering how they could impact disabled people. This could include access to places, adaptions needed or even whether the red emergency cord in a disabled toilet it correctly all the way to the floor.

What is one thing you wish people would know about disabilities and chronic illnesses?

Each person's experience and situation with having a disability or chronic illness is different and their needs will vary. Just because one person with the same or similar condition(s) is able to do something does not mean that someone else will be able to so you should never assume anything about someone who is disabled or chronically ill.

Have you ever witnessed medical gaslighting with me in my appointments?

Unfortunately yes, and on more than one occasion. When you weren't able to see your regular GP, you had one appointment where the other GP downplayed the symptoms you were explaining to them. They even turned to me and started responding to me even though you were the one who was speaking with them. I know for some of your conditions that you experienced gaslighting on more than one occasion and it took multiple appointments for you to be taken seriously, which meant you weren't able to access the help you needed to control things such as your pain you were experiencing. 

What are some misconceptions about caring for a partner that you'd like to address?

One of the things about caring for a partner isn't about doing things for them all day every day. Sometimes, just helping them with simple things can be really helpful for them, such as taking their medication or helping them get to the loo if they are physically struggling one day. Something else is that it's not a burden to help care for you. Everyone needs help sometimes, so helping someone you love and care for should not be seen as a negative thing.

Are there any misconceptions that you yourself have learned about that you once thought were true?

I didn't previously realise the realities of ambulatory wheelchair users. I knew that just because someone used a wheelchair, this didn't mean that they couldn't walk at all, however, I'm now much more aware of the reasons people use a wheelchair and this can vary day to day and even within the same day. People may be able to walk for so long and reach a point where they then need to use a wheelchair. I also thought that accessing support for help and financial support was much easier than it is, and now realise that getting access to things such as a blue badge, never mind financial support is a lot harder than it should be. 

What advice would you give people in the same situation as us, with one partner caring part/full-time for the other partner?

Obviously, things will be different for every couple depending on your own situation, but there are some things I think would be applicable to a lot of people. Taking the time to plan ahead and prepare can really help. This could be for if you are going away on holiday, or even for the next day when you will be out at work. Things such as the Sociability app are useful to download as they collate a whole host of accessibility information in one place. I'd also reassure you that it's worth sticking to your guns when it comes to things and don't be afraid to speak up for your partner. Be firm but kind and don't let anyone gaslight or downplay your partners needs as you and your partner know best. 

What are your hopes for the future regarding my care and our situation?

I'd prefer to be able to work from home in the future in whatever work I'm doing as it would make it easier to help out when I was on a break from work or on the off chance you took a turn for the worst I'd be able to help straight away. I know it's something we are currently working towards, but I hope we are able to get a blue badge to make it more accessible and safer when parking. It would be a help if you were able to get some financial support, even a small amount to help cover the additional costs you experience such as medications and access aids. I know we have also talked about our house situation in the future, and I think if we could either move or extend our house at some point to make it easier for you to get around if we could have a more open-plan space. I know we don't have the funds to do this any time soon but I hope in the future we'd be able to.

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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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