A Blessing From The Internet.

Social media is frequently lambasted as being anti-social, unwelcoming, and full of arrogant over-sharers who feel the need to share every last second of their lives with the internet (let’s not forget the self-important bloggers who take this to a whole new level). It’s been blamed for crimes and radicalisation, and is associated with spreading fake news and false evidence that backs up conspiracy theories such as the world being flat. I can assure you that the world isn’t flat because if it was, it would be a damn sight easier to navigate from a wheelchair.

All social media sites have faced their fair share of criticism, whether it be for selling personal data for profit, or altering photographs so significantly that the people in them look more like tall Barbie dolls than they do actual human beings. Perhaps the site that has been the subject of the most controversy though, is the one that allowed the president of the United States to discuss the ever-important issue of covfefe with the public. I am of course referring to Twitter.

I didn’t set up a Twitter account until February 2018, mainly because I had heard so many stories of horrendous trolling and abuse that I didn’t want to become embroiled in the supposed melee. However, I decided reaching out to Twitter would be a cheap and easy way of introducing more people to my way of thinking, so I set up an account while mentally preparing myself for an onslaught of far-right conservatives telling me I would burn in hell for the heinous act of finding Jennifer Lawrence attractive. I was pleasantly surprised.

What I found on Twitter was not a bucket-load of prejudice and malice, but a large, supportive community of likeminded individuals who all banded together to help those around them, even when living on opposite sides of the planet (another one for the flat-Earthers). A lot of wheelchair users and chronic illness sufferers soon climbed aboard the Diary of a Disabled Person train, the only train where you don’t have to pre-book a ramp several years in advance to then play an adrenalin-rush inducing gambling game of whether said ramp will even materialise. I also had people with other disabilities and learning difficulties follow me, as well as a large LGBTQ+ community, some medical professionals, a few academics, and somehow I seem to have attracted a reasonably large black community, which is uplifting considering I’m so white that my skin peels upon exposure to moderate sunlight.

It is undeniable that I have faced plenty of trolls, my particular favourite calling me an unemployed scrounger living off of other’s pity, clearly having never bothered to actually read my blog or refer to any of my social media history. He shut up pretty quickly after I had pointed out the fact that I was responding to his Tweet on my lunch break while sat in the office kitchen. I have also been told that disabled people should be left behind in the dust as a result of natural selection, obviously having failed to consider that many disabilities are developed later in life and are not genetic, nor understanding that humans evolved the trait of intelligence, not the ability to walk far.

However, when I compare the number of trolls I have encountered to all the positive support and encouragement I’ve received from everyone else, particularly during rough times, I’ve come to realise that social media is not the ugly dog-eat-dog situation some people would have you believe. It is, from personal experience at least, a useful tool for connecting with others and learning about our differences, and is a great platform to advocate for social change.

If you don’t already, please do follow me on Facebook and Instagram (@diaryofadisabledperson), and Twitter (@WheelsofSteer).

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.

AYME

M.E Awareness Week.

M.E Awareness Week takes places from Thursday 11th May to Wednesday 17th May 2017. To commemorate this week, I will be releasing a special blog entry dedicated to a charity that has massively supported me as a sufferer of M.E on Sunday 14th May. Besides this, I will be posting an M.E “Fact of the Day” every day throughout the week on my Facebook page.

If you enjoy reading this blog, then please like my Facebook page, which can be found at https://www.facebook.com/diaryofadisabledperson/?view_public_for=1644357455866689. Not only will you receive a notification every time a new blog entry is posted, but you will receive additional content throughout the week such as photos and fun facts.

Facebook Page

I have set up a Facebook page to accompany the blog, that will announce new blog posts, discuss relevant media articles, and will serve as a place to ask me questions about living with a disability. Please feel free to like the page, and get a notification every time I release material here!

Thank you very much for your readership and support.

https://www.facebook.com/diaryofadisabledperson/