Trying to feel proud for Disability Pride Month

July is Disability Pride Month – a month for Disabled people to share our lived experiences and also raise awareness of the obstacles our community faces. Disability Pride Month was born in 1990 as a day of celebration when the Americans with Disabilities Act (ADA) was signed into law. That year, Boston held the very first Disability Pride Day, and the first official celebration of Disability Pride Month was held in July 2015, marking the 25^th anniversary of the ADA. This has gradually spread, and now many countries across the world celebrate Disability Pride Month by holding parades and other festivities. We even have our own flag, which was designed by Ann Magill – it has a grey background and then different stripes in different colours to recognise different types of Disability and the solidarity between us.

 

But you’ll be forgiven for not knowing much about Disability Pride Month. I only found out about it a few years ago, and sadly it’s still very underrepresented. Very few brands and companies do anything to mark it, and the only real reason I found out about it was because I follow other Disabled creators on social media. There’s so much I could write about Disability Pride Month, but today I wanted to explore what feeling pride in my Disability means to me in the hope it might help others in a similar situation.

Ever since I found out about Disability Pride Month, I’ve been keen to join in with the awareness raising. I’ve posted on social media for the last few years about it, contacted numerous companies to ask them what they’re doing to mark it (and make their company more accessible) and spoken about it in general conversation with friends and family. But one thing that’s always troubled me is that I’ve never really been able to fully identify with feeling proud to be Disabled, and that felt like a pretty big issue!

 

I’m Disabled through chronic illness, and the illnesses that I have can be extremely debilitating. They leave me feeling, often, incredibly unwell, mean I spend a lot of time in hospital having invasive tests and treatments, have resulted in me missing out on huge parts of my life and stop me being able to do a lot of the ‘normal’ things that my peers are able to do. So, I think it’s understandable that I don’t feel particularly proud about being Disabled. I often feel angry, upset, frustrated – I spend so much time grieving the things I’ve lost – and most of the time, I find myself wishing I wasn’t Disabled. So, I’ve often felt like a bit of a hypocrite when I’ve spoken about Disability Pride and have worried that it’s yet another space that I don’t belong in.

 

But the more I’ve read about Disability Pride Month, and the more I’ve listened to other Disabled people talking about their experiences, the more I’ve realised that I do belong in this community and that my experiences are valid. Disability is such a complex thing, and no two Disabled people are going to have the same experiences or feelings. I think it’s so important to remember this and to make space for the stories of Disabled people from all backgrounds. I’ve gradually come to learn that it’s absolutely OK to have mixed feelings on your Disability, and that actually it’s pretty normal! I don’t think I follow one Disabled person that hasn’t, at some point, been frustrated by some element of their Disability. 

 

So, I’ve been trying to look at my place in Disability Pride Month a bit differently this year. I’m reassuring myself that I don’t have to be overwhelmingly positive about being Disabled if that’s not how I feel now. But there are still plenty of things related to my Disability that I can feel proud about. I can feel proud about taking up space wherever I am and remind myself that, as a Disabled person, I deserve to be able to access the world just as non-Disabled people can. I can stop apologising every time I ask for my needs to be met. I can stop feeling embarrassed every time I have to ask a shop to clear furniture and cleaning equipment out of their Disabled toilet or changing room just so I can use it. I can stop saying sorry for ‘getting in the way’ in my wheelchair. I can just be unapologetically me – Disability and all. 

 

This month is going to bring up a lot of different feelings for Disabled people and that’s OK. The whole point of this month is to amplify Disabled voices from all backgrounds so we can share our experiences, the struggles we face, our triumphs and what the world can do to make life more accessible for us. So please don’t feel like I felt, that if you’re not completely positive about being Disabled that you don’t belong in this community. Because every single Disabled person has a place in the Disabled community, and your thoughts and feelings around Disability Pride Month matter just as much as the next Disabled persons’ do. So, whether you use this month to shout about Disabled joy, talk about the struggles you face as a Disabled person or just sit quietly with your Disability and show yourself some TLC – there’s no right or wrong way to mark Disability Pride Month.

 

Have you heard of Disability Pride Month before? How do you like to mark it?

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My Experience of Train Travel with a Disability

I can’t remember the last time I made a journey by train and didn’t have some sort of accessibility problem. It’s happened so much now that I just can’t ever imagine being able to take a train somewhere on my own. With every journey I make, I live in constant anxiety about what’s going to go wrong next. And it really shouldn’t be like this for anyone. Train travel should be accessible to all. 

One of my biggest bugbears about taking a train in the UK as a disabled person is that there is very little opportunity to be spontaneous. As an able person you can pretty much turn up to any station without prior warning, buy a ticket and hop on a train to anywhere you fancy. But if you’re going to need assistance getting on and off the train, you’re expected to have made arrangements at least 48 hours beforehand. OK, so most train companies say that they ‘recommend’ you book assistance before you travel, but in reality, you often get a lot of stick if you don’t follow that recommendation. 

I travel up to London quite a lot for medical appointments, which means needing to use both mainline and London Underground/Overground services. Medical appointments in themselves will often create higher levels of anxiety, so add into that needing to travel long distances and you’re already starting the day feeling more vulnerable than usual. For the majority of my outward journeys, I tend to ring up ahead of the day and let the train company know that I will need a ramp to get on and off the train. That’s usually the easy part. I give them my details, tell them I’m in a wheelchair and let them know which trains I am planning to use to get to my destination. 

So far so good, right? Well, apart from the fact that this then ties me down to having to catch an exact train, as well as having to make sure I am quick enough to make any connections, it wouldn’t be so bad if it actually worked! But, ninety nine per cent of the time, I will arrive at my local station, wait patiently on the platform for my train to arrive and then when it does, no one will have any knowledge of me needing assistance. Sometimes the guard will spot me on the platform, ask if I’ve booked assistance and when I say that I have, will say that they hadn’t been told. But at least then, they will usually find a ramp and get me on the train. But a lot of the time, the person I’m travelling with (or fellow passengers) end up running up and down the platform trying to find the guard before the doors close and the train leaves the station. So I end up wondering – is there actually any point in booking assistance in the first place?!

My experience when I’ve supposedly booked assistance isn’t particularly dissimilar to my journey home again when I haven’t. It’s impossible to book assistance in advance for my train home from hospital (or any other trip to be honest!) If it’s a hospital appointment, I have no idea whether I’ll be seen on time, how long I will end up waiting, how long my appointment will last and whether I will need to do anything else after that appointment. And if it’s not a trip for a medical appointment (like, on the odd occasion, I do actually like to try and do something fun!) then I don’t really want to feel like I’m constantly working to a time limit – it just adds constant pressure to my day and takes away any enjoyment. So I don’t ring 48 hours in advance to book assistance for a particular train. 

And like my journey out, I reach the station and am usually asked by station staff whether I’ve booked assistance. So many times, when I answer ‘no’ to this question, I am made to feel like I’ve done something wrong and that I’m an inconvenience. Even when I give my reasons for not booking (which I really shouldn’t have to do) I’m still told that I really should have booked if I wanted help. I’ve effectively been ‘told off’ by station staff before for not doing things ‘properly’ – way to make a disabled person feel completely humiliated! I just can’t comprehend why train companies can’t understand that disabled people just want to be able to travel in the same way as everybody else! How would they cope if someone told them that they had to plan the exact trains they needed to get every single time they needed to go out somewhere? 

One of my worst train experiences happened fairly recently after a hospital appointment in London. I came back to the first station of my journey to find absolutely no station staff anywhere. The ticket barriers were up, the ticket office was closed and there was nobody on the platform. Sitting in my chair on the platform, I hoped that the train would have a guard who could at least help me. But when it turned up, there was no guard on this particular train (and this is one of the reasons why I completely support the need for guards on trains!) Other passengers got on and off, and all I could do was sit by the door, hoping that someone might notice that I was stuck, while my Dad ran up and down the platform trying to find someone. 

Another passenger noticed that I couldn’t get on and asked if there was anything she could do. I use an electric wheelchair that weighs around 100kg, so short of learning how to levitate there’s unfortunately not a lot anyone can help with. She was absolutely lovely though and ended up running down to the driver to tell him that I needed to get on. This situation began to draw the attention of other passengers, who were either staring at me, or watching this lady attempt to talk to the driver. There was quite a commotion happening as we watched the driver throwing his hands in the air at this lady. As she walked back down the platform towards me, she told us that the driver had simply shouted at her for causing a problem and told her to go away. So, she then decided to simply stand in the doorway so the doors couldn’t close and therefore the train couldn’t leave. The driver eventually had to come down himself and get the ramp for me, much to his protests and anger. I understand it wasn’t really his job, but again, it’s not nice to be on the receiving end of someone’s anger for something I can’t do anything about!

Whilst I massively appreciate the passenger standing up for me (I would probably still be stuck on the platform if it wasn’t for her!) it is hugely embarrassing to have everyone’s eyes on you because you simply can’t access public transport. It didn’t help that the train driver then made an announcement to the whole train that the reason for the delay was that there were no platform staff to help me! I just wanted the ground to open up and swallow me. So whilst of course I appreciate other passengers looking out for me and standing up for my rights, I would much rather that they didn’t have to at all. I don’t want to make a big scene when I use public transport. I just want to get on and off like everyone else does! On this occasion, I was so close to crying because I felt completely humiliated and embarrassed about the whole situation. This isn’t accessibility or equality!

There are so many other things that have gone wrong when I’ve travelled by train in my wheelchair. Whether it’s lifts not working (and being shipped off on different trains all over the place), people using the wheelchair spaces for luggage and refusing to move, not being able to get off a train and ending up stuck going to completely the wrong place or not being able to access the toilets on a train journey and therefore having an accident. 

Yes, there are staff that try their best to make train travel accessible to those with disabilities and I will be forever grateful to the ones that do. But I think this problem goes higher than individual station/train staff. Why, in 2019, are our railways still so inaccessible to people with disabilities? I know so many people who simply don’t or can’t travel because the accessibility just isn’t good enough. People, who could, if disabled access was given more thought, actually go out on their own, be independent or leave their town for the first time in years. But instead, they end up trapped in a small bubble – unable to access medical appointments, unable to go to work and unable to go out and have fun. Simply because disabled access doesn’t seem to be a priority. 

I want to be spontaneous. I want to be able to get on a train without drawing unnecessary attention. I don’t want to arrive at a station and feel absolutely terrified that I’m going to be told off, left on a platform or end up trapped on a train because there’s no way off. I want to be able to access the world, to enjoy myself, to get to my medical appointments on time. And I don’t think that that’s too much to ask.

If you’re disabled, what are your experiences of travelling by train? And if you’re not disabled, what are your thoughts on disabled access on trains?

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Spring Blooms at RHS Wisley

Back in April, I took my Mum to RHS Garden Wisley as a belated Mother’s Day treat. I took quite a few photos, so I thought it would be nice to share my trip with you, in case you’re looking for inspiration for places to visit. RHS Wisley is a beautiful place near Woking in Surrey, full of picturesque gardens, colourful flowers, tranquil water features, bustling cafés, a shop and a huge garden centre. As someone who uses a wheelchair, it’s always nice to find places to go where I can access the outdoors in my chair without getting stuck in the mud or being tipped out due to uneven paths! And Wisley is one of those places that, on the whole, has brilliant disabled access.

My Mum and I arrived at Wisley mid-morning on a Monday, and the car park was already overflowing. We were worried we wouldn’t be able to find anywhere to park, but thankfully there were lots of empty disabled bays right near the entrance, so we parked up, got my power chair out and made our way in. After buying our tickets and having a quick look at the map, we headed right towards the Laboratory Building and Jellicoe Canal. It was a beautiful sunny day and this iconic Wisley view looked truly spectacular. The Laboratory building is surrounded by terraces with all sorts of plants and trees growing across them. And the canal, laid out by Sir Geoffrey Jellicoe in the early 1970’s, gives beautiful reflections of the Laboratory as the fountain splashes calmly in the background.

From the canal, we walked into the adjoining Walled Gardens, which are separated into two areas. We mainly looked at the rear Walled Garden West, which shows the creative effects that can be created with foliage plants. It felt very peaceful and relaxing there, surrounded by greenery and still water. 

We made our way past the construction site, where a world-class, multi-million pound welcome building is being built to help sweep visitors through into the heart of the garden. It was looking pretty amazing when we were there, and is due to be opened by Alan Titchmarsh on 10^th June 2019. I can’t wait to go back and see how it looks when it’s finished! Just past the new Welcome Building and Food Hall, we came across a whole collection of the most amazing blossom trees. We were obviously there just at the right time, because the blossom was all in full bloom and it was incredible seeing all the different shades of pink and white and they rained petals onto the ground. Of course, I had to stop and take a few photos!

Past the blossom trees, we carried on into The Pinetum, which boasts a collection of century-old trees, many of which are conifers. Apparently the best time to visit this area is in the autumn and winter, when many of the accompanying deciduous plants show their autumnal colours. But even though we were there in spring, it still looked pretty magnificent with the towering trees. You can also go down to the Riverside Garden, but the path didn’t look particularly wheelchair friendly unfortunately, so we gave that a miss.

Through the Pinetum, you then reach Howard’s Field and Heather Landscape. Wisley describes Howard’s Field as a quiet, contemplative clearing, home to some fine specimen trees. It also houses the National Heather Collection – one of the largest heather collections in the British Isles. There are around 25,000 heathers, including 900 cultivars – 162 of which are considered endangered. I can imagine this must look amazing when all the heathers are flowering, so I will definitely be going back throughout the year to see how the space changes. There were also some talented tree carvings and bee houses, and you can view a wildlife conservation area on the banks of the river Wey from the Field. 

We made our way right up to the Stone Pine Café at the very top of Howard’s Field, which looks like a beautiful place to get a bite to eat. It’s a very select eatery, with only 16 seats inside and around 30 outside. The Café is table service and serves freshly made salads, sandwiches and cream teas. It definitely looks like somewhere nice to go if you’re looking for somewhere a bit quieter to eat.

By this point, we were feeling pretty peckish ourselves, so we headed back the way we came towards the newly built Food Hall. Although it was quite noisy and busy inside, we didn’t have to queue long to get our food and we had no trouble finding a table. They actually had a selection of tables labelled with disabled signs, meaning they were easier for wheelchair users to access, which I thought was a brilliant idea. There were so many dishes to choose from including sandwiches, cakes, pastries, soups, homemade main meals like fish and chips, curries, lasagnes and even a roast dinner! In the end, I went for a cheese and pickle sandwich and some crisps, while my Mum chose the soup of the day with some crusty bread. It was all very nice and we soon had full tummies and were ready to get back out into the gardens again.

As we’d spent the morning looking round the right hand side of Wisley, we decided to head left out of the Food Hall and make our way over to Oakwood, formerly known as the Wild Garden, and the historic heart of Wisley. This is a beautifully peaceful part of the gardens and is packed full of so many different plants, trees and flowers. My particular favourites this time were the stunning Magnolia trees – I’ve honestly never seen anything quite like them! Their branches were crammed full of delicate pink and white petals, while others lay in a pink blanket on the floor. Amongst the Magnolias, there were also Camellias and Rhododendrons – everywhere you looked there were splashes of amazing colour. We even met an adorable duck, which waddled right up to my wheelchair, followed closely by his wife!

Coming out of the other end of Oakwood, we were greeted by The Glasshouse – a magnificent cathedral-like structure covering the area of 10 tennis courts. We decided not to go inside this time, as there were other things outside that we wanted to see. So instead, we doubled back on ourselves and walked down through the Alpine Meadow, which was scattered with Hoop Petticoat Daffodils that made the whole slope look a cheerful shade of yellow. Down towards the bottom of the water that runs alongside the meadow, was a stone carving of a bear catching a fish. It took us a while to realise it was more than just a rock, but it’s a lovely subtle design that fits perfectly with its surroundings.

We then went past Bowles Corner and over to the Cottage Garden. I think we were a bit early for any flowers, as there wasn’t much blooming yet, but it still looked really pretty and I can only imagine what it will look like when all the flowers start coming out.

We also went next door to The Exotic Garden, which showcases plants that have a tropical look and feel. Again, we were too early to see much colour, but I loved the water feature in the centre of the garden. I’ll be interested to go back in the summer to see how different it looks. 

As we made our way back through the Mixed Borders, we decided to go back to the Food Hall and treat ourselves to a cream tea. It was much quieter in there this time, but we each got ourselves a scone with clotted cream and jam, and I also had a hot chocolate, as it was a getting a bit chilly outside. It was such a lovely way to end a Mother’s Day treat and by the time we had finished, we were feeling full up, rather sleepy and ready to head home.

I loved my time at Wisley so much, that I decided to become an RHS member before I left. I personally felt the membership was incredibly reasonable considering all the different places it gives you access to, and because I have a disability, I am able to also bring two other people with me on my card, so it’s perfect for going out with my Mum and Dad. I’m already working out when we can head back to Wisley again to see all the new summer flowers. I’m particularly looking forward to seeing their Wisteria Walk and also the Bowes-Lyon Rose Garden when all the flowers come into bloom – from pictures I’ve seen of previous years, I’m expecting it to look amazing!

Are you enjoying everything that spring brings? Have you been to RHS Wisley or can you recommend other places I might like to visit?

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