Happy new year to you all! It’s 2018. As we enter a new period, I’m very much raring to make this year one where I make a much bigger impact on society. It might sound like a big task to take on, but from a professional point of view, I’m planning it out with a slow and steady program.
I started my blog back in March, got more frequent with it in July, and have gained some friendly recognition for the work I’ve completed up to this point. Now, however, I want to use my voice, thoughts and personality to put out some messages that will build a much more interested audience.
Perhaps best described as ‘spiritual, but not religious’, I’ve looked into numerology, and my life path number 1 seems to summarise me. I have a strong sense of independence, but a desire to excel and to lead others. I’m innovative and ambitious. Nobody’s perfect though, and because I like to keep moving forward, I’m also impatient and may appear arrogant at times.
The Current Situation
With these characteristics, I want to build something much bigger than I did in 2017. Although my specialist subject is epilepsy, my thoughts often sway towards the fact that other invisible disabilities do exist. I’m epileptic, an epilepsy advocate, and want to raise epilepsy awareness more than anything. Is that selfish? It’s debatable.
However, raising epilepsy awareness isn’t easy. Although I’ve gathered a few more followers with the free release of my Essential Epilepsy Information documents, it hasn’t gathered much attention. I’m just one lesser-known epilepsy advocate/blog writer at the moment, among thousands or millions of other bloggers that exist online.
With the ultimate goal not being my success, but the raising of epilepsy awareness, it wouldn’t be right to forget that other epilepsy blog writers have had more success than me. There are also epilepsy-related charities, some of which are independently working hard in certain towns and cities. They tend to have websites and blog as well.
Plus, we will never forget the biggest epilepsy-related charity organisations available; for example, Epilepsy Action and Epilepsy Foundation. They rightfully have the most power and work hard to send out messages and make as strong an impact as they can on society.
But working hard as they do, do any of these advocates and charities have the ability to raise epilepsy awareness a great deal in the foreseeable future? I hope the answer is yes, but my gut seems to be telling me otherwise. More often than not, events that trouble people with epilepsy seem to be recurring.
Hitting Disability Hard
If people were more aware of what epilepsy is, then people affected by epilepsy would be a lot happier: it’s all about understanding; it’s all about acceptance. But don’t forget, if people were more aware of what autism is, then people affected by autism would be happier too. Right now, a variety of invisible disabilities are the most ignored health conditions on the planet, and it’s not doing them any favours.
One thing that a person affected by an invisible disability is likely to want is a cut-down of discrimination. I can’t specifically speak out for how poorly people are treated by political parties in other countries, but the UK Government has recently made too many offensive errors.
The court order case against the Conservative’s Personal Independence Payments in November 2017 proved people with disabilities often weren’t funded enough because of its poorly formatted system. Judges ruled the Department for Work and Pensions should base decisions on how serious harm is, not how likely.
Even earlier in the year, the United Nations made a very negative statement when looking at the UK’s treatment of people with disabilities. The Government was told: “Evidence before us now and in our inquiry procedure as published in our 2016 report reveals that social cut policies have led to a human catastrophe in your country, totally neglecting the vulnerable situation people with disabilities find themselves in.”
However, these facts don’t reach the minds of many; articles talk about these issues but aren’t shown on the front page or read by many readers.
Because of this, I believe we need to build a bigger picture for more people to see and understand why it really can be frustrating to be treated in this way. I’ve told many of my family and friends what the problems are, and they all agree that as a whole, disability is not being treated fairly by others.
The Bigger Picture
If we’re going to make life work better for people with invisible disabilities, then we need to get the right people involved. To get the right people, we need to gain access to what will hopefully be a large group of supporting individuals that are truly willing to offer their services.
Right now, a lot of people are keeping themselves very quiet. For example, a few of you must know of celebrities who have invisible disabilities: bipolar disorder; OCD; diabetes. But although some might choose to help out their condition’s best charities, they don’t often choose to campaign and reveal the problems that occur.
Whether famous or not, a lot of people affected may have talent but tend to exploit it in other areas of interest; they keep their conditions under wraps.
Although quality charity organisations can take time to build, I believe we should form one that all people or charities relating to an invisible disability can choose to join. Those involved could then try and paint a bigger picture for the world to see; not about their specified disability, but invisible disabilities as a whole.
One thing that the organisation could help to produce are projects that would gather the interests of many and educate them in due time. For example, the first idea that came to my mind would involve screenwriting a drama.
All dramas have themes, and it’s certainly possible to learn things whilst watching entertainment with great interest. Breaking Bad is now considered one of the greatest television programmes of all time, and involved a fair few chemical structures and equations being drawn and written as props for the show. Thanks to the University of Oklahoma’s Dr Donna Nelson, they were all scientifically accurate.
Writing something as well acclaimed as Breaking Bad seems very difficult, but it’s not impossible. I haven’t mentioned this to many, but screenwriting is something that I would love to do in the future. I have no experience yet, but would need to take a good course in it, and have the option of gaining a masters degree if I wish. Of course, I know the experience of others would be useful too.
“An ongoing story of how families affected by different invisible disabilities make drastic attempts to find a decent income” – that sounds entertaining to viewers, doesn’t it?
Other Arts, Other Actions
Of course, this is just one idea. I may be innovative, but so are others, and when trying to find ideas for new projects we could simply ask our supporters, “Who wants to get involved?”. When unemployed and feeling secluded, I’m sure that volunteer creativity would have gathered my interests when I was quieter in the past. Inspecting them all carefully, we could potentially find the ideas to build something special.
Although I don’t wish to write off what I’ve found, a major charity website with quality, updated information and advice relating to invisible disabilities alone doesn’t seem to exist in the UK. In America, I have come across the Invisible Disabilities Association and the Invisible Disability Project. They seem to be making their efforts across the Atlantic.
Starting something affective in the UK could be a good idea. Looking at my more ideal progression, I like the thought of getting other charities (like Epilepsy Action, the National Autistic Society) a little involved with ours. By grouping together we could eventually gain a greater sense of power in society.
Before this sort of organisation could ever be born, it’ll take a lot of time, planning, networking with others, because I certainly want to build something professional. Hopefully, though, we’ll have plenty of people involved with the charity, offering their professional skills and services of innovation to keep everything steady and new ideas coming.
It’s Time to Talk
Right now, I’m going to keep writing my articles about epilepsy, but also begin to broaden my horizons by talking to people affected by any invisible disability. I’d like to know their problems; what kind of support they’re looking to receive. I can see myself offering support when it seems fair. There are already charities to look at and talk to in the US too.
I’ll mention my future ideas and intentions to them when it’s time for me to talk; giving and receiving is the smartest way to success. By doing this, I believe I can find a way to offer my services and achieve my ambition. What I’m looking for is a team effort, and I know there are people out there who are just as willing to end discrimination against disabilities as I am.