Charity – Diary of a Disabled Person.

Sweet, Sweet Irony.

One consistent occurrence that continues to amuse me on a regular basis is the way different types of people react to the wheelchair, usually spitting in the face of stereotypes and then allowing me to run said stereotypes over. I can think of no better example of this than a situation I encountered recently as I returned home from a night out.

A couple of streets away from my flat there is a new block of posh flats and offices being built adjoining one of the big shopping centres in Leeds, and the scale of the job means that the pavement has been completely blocked off. All pedestrians must use a narrow section of the road cordoned off for them to walk through safely. At points this area is narrow enough for only single file pedestrians going in each direction so as not to impede the traffic on the main road, and occasionally this can cause difficulties for the wheelchair.

It was a Saturday night and all the clubs and pubs were overflowing and spilling out onto the pavement. Among these was a group of tipsy students, all male, who were staggering through the improvised path towards us. I was more than prepared to pull over to one side at a wider section in order to let them past, as their movements indicated that perhaps they weren’t fully in control of their actions. To my surprise they stopped and stood to one side to allow me and Jarred past. As I went by them I thanked them, which was greeted by a series of cheery, if slightly slurred, greetings.

Jarred and I made it round the path and back onto the pavement without too much trouble, and we carried on towards our block of flats which was visible from the road. Ahead of us I spotted a large group of charity workers ambling slowly along the pavement, pulling large carts behind them full of meals for the homeless. We came to a crossing where they blocked the lowered kerb that allows me to cross the street safely. By the time they had moved more traffic was pulling onto the street, and I had to wait before I could cross.

We crossed the road, reaching a narrow pavement littered with lampposts and traffic lights. Here the group of charity workers had stopped again, despite the fact that around the corner, mere metres away, was a wide expanse of pavement perfect for stopping on. They had blocked the entire pavement, not just for my wheelchair, but for all pedestrians who were having to step down onto the road to get around them. As I couldn’t step off the pavement I had to persuade them to let me past.

It took two attempts for Jarred to convince them to move the first of the carts so that I could get round; they completely ignored me altogether. The second cart proved just as difficult and the final cart refused to move at all. As I squeezed past my wheels knocked the cart, for which I was tutted at (coincidentally the only interaction I received with them). The group apologised half-heartedly to Jarred, clearly believing us to be rude, thinking that their undeniably kind actions towards the homeless alleviated them of all other responsibilities.

These two encounters had happened maybe 100 metres apart, if that. Yet it was the drunken lads who treated me as their equal, with kindness and generosity, while the holier-than-thou charity workers treated me as if I was dirt on the bottom of their shoes. The irony of this situation was not lost on me; the people who are poorly misrepresented in the media, and who are blamed for all the troubles of society, were the ones to do the responsible thing. The people who will be hailed as heroes for their acts of incredible kindness and dedication didn’t care for anything but the fact that they were seen to be helping the homeless while I had selfishly been eating in a pub on a Saturday night.

This is yet more evidence in support of my prevailing theory; that kindness often comes from those you least expect it from.

A Small Corner of the Internet.

Shortly after I was diagnosed with chronic fatigue syndrome (CFS), sometimes known as myalgic encephalomyelitis (ME), I visited the NHS website to try and find out more about the condition and what it entailed for me in terms of symptoms and treatments. On one page several charities and support groups for people with CFS were listed, among them the Association of Young People with ME (AYME). I admit that I am sometimes wary of support groups, as sitting in a small and exclusive group bemoaning our trials is not going to integrate that group with the rest of society. However, when I followed the link to their website I found lots of information available about campaigns, events, and medical research surrounding the condition, and the general feel of the charity was a somewhat optimistic one, without being unrealistic. I decided to sign up to the charity, and within the week I was a member of AYME.

AYME provided a free bimonthly magazine called Cheers for it’s members, but it’s main attraction was the chatroom provided for members under the age of 26 years old. A similar chatroom was available for those over the age of 26 years, and another for carers of CFS sufferers, with only a small subscription fee for each.

The chatrooms provided a place to talk to other CFS sufferers about their experiences of the condition, advising each other on medical issues, and sharing ideas about how to keep up with education or work while being so ill. While the main theme of the chatroom was the common factor that we all shared, it was not the sole subject discussed. The most refreshing aspect of the chatroom was that not all the discussions concerned CFS; some were little word games like anagrams and riddles, others addressed pop culture, TV, music, films, books, and arts and crafts.

I had been a member of AYME for five and a half years and had made a great many friends, when I heard the news. AYME was to be closed down and merged with another charity called Action for ME, where the chatroom was split into under 18’s who still had free access, and over 18’s who had to pay. Action for ME is a wonderful charity, and the merge was sensible in terms of logistics and finances, but without prior warning that the idea of such a course events was even in discussion, this news caught all the AYME members off guard. Many of the over 18’s like myself dropped the charity membership, and even those that stayed were upset at being cut off from our under 18 friends.

A prominent member of the chatroom set up a Facebook group, enabling us all to keep in contact, although it could not be structured or run in the same way as the AYME chatroom. Mere weeks after setting this up, she was asked to take it down as it was not moderated like the AYME chatroom, and those in charge felt that it left younger AYME members vulnerable, despite the fact that I am unaware of any instances of inappropriate language or behaviour occurring on the Facebook group.

The members of AYME were not going to let such a set-back destroy the tight-knit community established on the chatrooms and set up another Facebook group, this time being extremely careful to distance itself from AYME. So far no one has been asked to remove the group, and the same community can continue relatively unperturbed.

AYME was a wonderful charity while it lasted, and provided emotional relief and support for many thousands of people, as well as educating others about the disease and campaigning for disabled rights. Through it I have made many friends who I still keep in contact with; I have laughed and I have cried with them, and I relied on their support for a long time. I kept every single letter and card that I received through them and am mightily glad to have done so, as this truly reflects the profoundly great effect AYME has had upon my life.

Uncharitable Charity.

At university I lived very close to my student union and regularly ate in the refectory which saved a lot of effort on cooking and washing up. The dining hall there is vast, with white tables and uncomfortable wooden chairs crammed into every space possible, and a dark laminate floor that makes my wheels squeak when they’re wet. At the end furthest from the kitchens is a small stage that is often used for concerts and shows outside of the refectory’s opening hours, which has hosted The Killers in the early 2000’s, and is where The Who’s “Live at Leeds” album was recorded.

Image Description: the album cover for The Who, Live at Leeds. It's plain brown with dark blue writing, all capitals, in the top right hand corner of the cover. Image description: the blue commemorative plaque for the Live at Leeds concert, which can be found on the wall of the student union at Leeds University.

While this stage is fit for purpose for concerts, it has two steps up to it and no ramp. Frustratingly, this was where the union decided to host their charity clothes sale for Cancer Research UK, without providing access for wheelchairs. I had been looking forward to the event for a few days and so when I arrived I was pretty disappointed about the inaccessibility, especially as the union has several accessible rooms where such an event could easily have been held.

Since the stall was quiet at the time, the member of staff on duty wandered over to speak to me. She told me in rather patronising tones that she was “ever so sorry” about the inaccessibility, but that nothing could be or have been done to resolve the issue. This was, quite frankly, utterly ridiculous, as even if they couldn’t have booked an accessible room they could have easily acquired a temporary ramp. Annoyed, I made a snide remark about how my money was worth the same amount as anyone else’s, before heading up to the coffee shop overlooking the refectory to drown my sorrows with caffeine.

Once I was settled with a large americano, I emailed a member of staff from the union who I knew relatively well from previous accessibility quibbles, and despite him being away from his desk for the day according to the automated reply I received, he responded within half an hour by assigning a temporary ramp to the event. A few minutes later I re-appeared in the refectory, ready to raid the clothes stall. This time a different women was over-seeing the stall, and she could not have been more apologetic or upset about what had happened. Her colleague, now nowhere to be seen, was quickly forgotten as I browsed the clothing rails. I picked up a leopard print scarf from the accessories section, and managed to find a beautiful white blouse covered in black swirls from a high-end clothes store that I could never normally afford. Feeling self-satisfied at having spent less than £5, I returned to my favourite table in the coffee shop and downed another americano and a frozen yogurt to boot.

While the attitude of the first member of staff left much to be desired, the attitudes of the man who organised the ramp and the second woman running the stall more than compensated for this. It is not the problem that causes me an issue, but the ability and willingness of people to provide a solution for the problem instead.