Dating With a Disability- Part Two

So I thought it might be a good idea to write a blog post on my experience of dating with a disability, especially as my boyfriend Rhys post was really well received.

I asked him to write a blog post for me on what his perspective is on dating someone with a disability, and any advice he would give. Safe to say, he wrote a really amazing piece and he explained exactly the point I was trying to make.

IT IS NO DIFFERENT TO DATING A HEALTHY PERSON.

People seem to think there is some advice to give for this, but it is literally just that. If you love someone, you love them no matter what. If they are the right person they will love you and embrace and love your disability too. Don't get me wrong, it has been hard on times, especially as I sometimes feel guilty if we have to go about things a different way.
It can be hard to show when I’m having a bad day, or flare up as it means that I am showing an incredibly vulnerable side but after having a long talk with Rhys I’ve realised that it is important to show my limits. One of my biggest worries was disclosing that I used to use wheelchair, and it is always in the back of my mind that some day it will be a possibility again since i've had my EDS diagnosis.

For the past couple of weeks, I have been having an awful pain flare. I am still managing to get by in work, but between the pain in my hips and legs and managing full time employment it has just left completely exhausted. I always feel guilty if I have to cancel any plans, or rearrange especially when those plans are with Rhys. Over time I have learnt that it doesn't matter that we aren't going on long walks or out clubbing every weekend, but just the fact that we are spending time together.

So here are my tip tips on dating with a disability!

Honesty

My advice for anyone who has a disability and is dating- Just be honest!
Be completely upfront and honest about your conditions as soon as you can, but don't disclose anything you aren't comfortable with. The sooner the other person knows, the sooner you will know if they are worth sticking around!

Communication

Explain what you can and can't do. Don't push yourself for anyone. If they are the right person they will do what it takes to make sure that you are comfortable, if they are annoyed at you for not being able to do something because you are in pain- they are not a nice person!

Patience

Give the other person time to come to terms with your disability. This doesn't mean that this gives them the right to treat you any less, but it can be different experience for someone if they are not familiar with your disability or chronic illness.

Time

The only way you will truly know if they are the right person is by giving the relationship time, and that goes for whether you are chronically ill, disabled or completely healthy. Life is unpredictable and full of surprises, but the most important thing is to not give up.


-Sophie

xx

My thoughts on "Afflicted"

After seeing all the controversy surrounding the new Netflix original series “Afflicted” I thought it was only right I should watch it for myself before making any sort of comment. After watching it is safe to say, I was disappointed. Netflix, you have let us down!

For those of you that don’t know, “Afflicted” is a small documentary series set in America and is focused around the lives of a number of people with various rare chronic illnesses. Including conditions such as M.E, sensitivity disorders and lupus. All of which are seriously debilitating and painful conditions! The series contained interviews from medical professionals (primarily psychiatrists) and researchers with interviews from the sufferers and their relatives. So you would think it would at least be factually correct? No! The series manages to provided no factual evidence at all and from the start the programme puts doubt in the viewers mind as to whether these PHYSICAL conditions are actually real, or whether they are all in the patients mind.....

What made it even worse was seeing the interviews with the relatives and especially the parents who seemed to focus on their own doubts of their validity of their love ones conditions! Now, clearly this was edited, and I am sure that they spoke greatly about the conditions itself but it seems that it clearly wasn't interesting enough to make the final cut. In order to make the series more interesting and watchable they decided to play a guessing game with the viewer whether the conditions are real or all just in their heads.

Now some of you know, I have depression and I am in no way suggesting that a mental illness is any better or worse than a physical condition. They are both awful to deal with in their own ways. However, I believe that it is totally wrong for physical illnesses to be portrayed as "all in our heads" and that we are "making it up."

It was heart breaking to see the extreme suffering that these people had to go through for them to only be stigmatised and mocked in front of a global audience. I later found out that the participants of this series were initially told that they were would be a part of a “compassionate" documentary of what it is like to live with a chronic illness.

Our illnesses should not be used for your entertainment!

Netflix, you had an amazing opportunity here to spread awareness of a variety of conditions and the lack of resources that are available to treat them, yet you have turned it into a mockery. With such a widespread number of viewers, you have to take responsibility of the programmes you release and the impact that they have on the viewers. As a person with an invisible disability, it was extremely hard to watch. We are already a marginalised community but programmes like this only isolates us further. Shame on you.

Sophie

xx

The negative side of results day!

So it is nearly that time of year again- GCSE and A level results!

This time of year is always particularly stressful for young students, but it is even more stressful if you are chronically ill and disabled. Believe me I have had my fair share of "highs" and "lows" when it comes to achieving my results, so here are 5 tips to go by.


Firstly...

1. It is not the end of the world.

Many students and teachers seem to believe that if you don't have your life figured  out by 18, then you are somehow are not going to achieve great things. If you don't go to university, you are a failure, you are stupid, incompetent, you will never get a job. But the reality of the world outside education is far from this. There are so many alternatives that are under looked, but are so beneficial for young people today.

2. Alternatives to university?

One of the biggest alternatives to university, is an apprenticeship. I am currently coming towards the end of my business administration apprenticeship, and I can honestly say it has been the best thing for me. It has allowed me to complete a qualification at my own pace and being paid to do it as well! What is even better about this is that while being employed as an apprentice, we still have the same rights as regular workers. It is highly important to find a supportive employer, especially if full time is something you might struggle with.

3. Clearing

So, you didn't get the results you were expecting but still want to go to university? Why not try clearing? This may be a bit daunting if you are chronically ill, but there are still many ways that you can access support at university after you have started. It doesn't mean that you will miss out on any help because you have asked a little bit later.

Also, a big thing to note: Do not go to university for the sake of it.

If you are unsure what to do, apply next year!


4. College instead of sixth form

So points 2 and 3 mainly focus on A Level results, but what about GCSE? Didn't get the grades that you expected? That is totally fine, chances are there is someone else in the same position as you.
If you were hoping to do A levels but are worrying about the difficulty, why not try college instead?
Although there are some controversy over this, BTECs are a great way to get into university.

5. Resits

Lastly, the most obvious point to make- you can always resit! It is never to late to resit, and there are so many places that take on private candidates, that it is possible for you to study from home at your own pace.


Hopefully this will help anyone going through the stress of results day! If anyone needs any advice on anything else then feel free to contact me.

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Sophie
x

Scope for Change 2018- Residential Weekend

So the day had finally arrived! It was time for me to begin my journey for the Scope for Change 2018 residential training weekend.


I travelled up to Loughborough and spent 3 days there to begin training for my campaign with Scope. After feeling a little unwell on Friday, it was touch and go whether I would actually make it but I am so glad I did!

Day one

I left at roughly 7:30 in the morning, and after a long 4 hour journey we managed to reach the Burleigh Court in Loughborough at 11:30. The hotel we stayed in was amazing, and I later found out that Team GB Paralympians had previously stayed there! It was so accessible and all staff were really friendly.


We started the weekend off with a meet up with everyone, getting to know each other and then had some lunch in the restaurant. Afterwards, we had our first session which was "Planning a Campaign." This was really useful and a great way for us to get started! It focused on our objectives and aims, different tactics and how to target our audience. It was so useful to hear from other disabled campaigners and all our ideas just seemed to bounce off each other.

Later on, we  had a 1-1 with a member of the Scope team to talk about our campaign and what they could do to help. I found this particularly useful as it meant that we weren't on our own through this.


The day ended with a fabulous meal at the restaurant hotel and an early night in bed. Safe to say by around half past 8, I was knackered and in quite a bit of pain. I only wished I could have stayed a little bit longer!

Day Two

So this is where the training really stepped up! We had 4 training sessions which where spread out over the day, including a guest speaker. It included training like "Using Social Media" and how to spread our message across a variety of platforms, and how we can utilise the use of social media to our audience. Another speech, that was particularly useful was the "Making a change with your story and video." This was definitely one of my favourite session as it focused not only on our story as a disability campaigner, but also from the perspective of the interviewer. It meant that we were able to use these skills to be a competent and good interviewer when gathering testimonies for our campaign.

After a little lunch break, we then had two more sessions which included using persuasive techniques and how to influence people. My all time favourite session had to be from the external speaker- Bal Deol. After hearing her story and her journey of campaigning, she is officially my new idol! So Bal had discovered that she was being over charged by taxi firms, for simply being a wheelchair user. This led to her being involved in an investigating with the BBC whereby they were able to provide evidence to prove that she was right!

Over the course of a few years, she was able to propose a new legislation which meant that it is now illegal for taxi drivers to refuse to take wheelchair users which has been passed. Her story was so inspiring to prospective campaigners, and she has achieved so much at just 25 years old.

Towards the end of the day, my pain levels started to increase. I was so exhausted but so excited for all the good things to come. Unfortunately, I had to leave dinner a little bit earlier than I had hoped as I was just in too much pain in my hips and spine. 

Day Three

So this was our final day, and the weekend definitely flew by. Our first session of the day was "People, Power and Parliament" with another guest speaker called Skye Yarlett. She was brilliant and really engaging! This session was particularly useful if your campaign involves changing any legislation, and how to get the most out of your MP.

At this point, it had now been official that I was going to collaborate my campaign with Chloe, a fellow Scope participant who lives just down the road from me. We both have similar ideas in what we want to achieve, and for us to share the work load around our conditions we have decided to join forces. After all, two heads are better than one!

By mid day, it was safe to say I was really starting to struggle. It had been such a long weekend and I was battling all sorts of symptoms, but I'm so glad I managed to be a part of it. After feeling a little bit demotivated, I was beginning to feel that there was so much in the world that needed to be changed, would it ever be possible to achieve full accessibility and equality for disabled people? But after hearing Bal's speech, this was definitely the turning point for me in the training.  I would definitely recommend anyone with a disability to join Scope for Change! I am so grateful to be given the opportunity and I now feel like anything is possible.

It isn't about changing everything in society, it is about making a difference no matter how small.

-Sophie xx

(Photo Credit: Scope Team)