it's been one of those days, or rather just a few weeks where things have been a bit difficult for me. First of all, it was the Easter holidays. And my family. There was a couple of birthdays that were coming up that I needed to deal with before going back on to doing some more podcasts.
Thursday, September 30
But as we all know, life gets in the way. So that hampered my plans. I wanted to get things sorted out a bit more with the way things were going regarding Sweetestmoondust style, website, and I wanted to be more clear on what we stand for as a whole. Because people are not realising what cerebral palsy is, and not knowing what we can and can't do is a real issue.
When we're out and about, many of us can walk not always stably. We will be using either crutches, walkers, some of us can walk without, but still need some help support, you know, with people around us and may get anxious and have slight anxiety because too close to someone else, or something like that. Others are in wheelchairs, whether they be manual pushing along themselves or having people with them to support them.
I wanted to make it clear that Sweetestmoondusts style is regarding any disabilities, as well as my own, which is cerebral palsy.
I'm wanting to advocate more for people with this condition and others. Many of them are not counted at all and don't have the voice that they need.
There are so many of us that we are forgotten about. We are the forgotten few in a way because sometimes a disability is so mild that it doesn't register very much. Then, at a later date, in our lives, it will come more and more relevant and prevalent. Because we will be tired quicker, but we will be still wanting to do things. And get more frustrated
not being able to do them, or having more and more struggle doing them and then having to ask people for their help sometimes.
We want to ask sometimes we don't. Sometimes we don't want that help. We don't want to look as if we're being ungrateful. But independence is there negated because we are the same as everybody else. And that would need to happen. if you've got asthma, you don't want to be treated by anyone different from someone who doesn't have asthma. You don't want to be treated any different than anyone else who's got glasses if you don’t want to be treated any differently.
Yet with cerebral palsy, it just happens to be a slightly more physical situation where it can be harder for us to either speak or relay our meanings across. I will stutter or I'll slur or I'll hesitate slightly longer than I should. Those are because of the way that I'm trying to get things out or I haven't had the right wording in my head even though I may think my voice might say something completely different from what it means. I'm wanting to clarify things with people because this is what Life with Sweetestmoondust is all about.
I will be putting up videos regarding makeup skincare, how we do it or rather show I how I do it because of my disability what I love by tech-wise what I do
I have written a few books “The monster within” and “Questions” and “More Questions”. I think with things like that, we can show that we are relevant in this world because it doesn't mean that we can't do things it means that we have to do things differently from everybody else. I want and hope that this world can be treating people of all races, all colours, all nationalities, disabilities, as the same, we needed all to be equal. In that respect, yes, we are different, and everyone is different. I'm being passionate about this, because, whether you be coloured or white, as the saying goes, but we're all different colours. We've got people who are albino, white, and then you got people who are pink, who are brown and everything across.
I don't see the point of taking the Mickey or being nasty about someone with a different race, different colour, different disability. Some people can't use their hands, they can't use their feet, sometimes they can't even talk. And that's someone I want to advocate for. The people who can't get their message across and who can't do what they want to do because they are stuck in their heads, not being able to express what they want to say properly, and may have to use a computer screen as Stephen Hawking did. Or hand movements or eye movements, or whatever the situation is, they need to be shown that they are valid, wanted, needed.
I'm really worried that with everything going down at the moment it is crazy.
I've seen recently locally in the UK, that there have been people in wheelchairs struggling, especially with seating outs, you know, when people are wanting to sit outside, which is great. But is it worth struggling? Because they can't get through their streets because we can't walk past I say walk, but you might say, go pass in a wheelchair or whatever. But it's, that's, that's the thing. We need to be showing that we are valid. And we are important.
We can't be shut away.
We don't need that. We need to be told that we are needed. We can do things and I will keep saying that because it is so important. Life for everyone is important. And that can't be shied away from for anybody.
Having cerebral palsy is just an aspect of me, not the whole of me. I'm wanting to get things said locally, nationally, internationally. I managed to get a crossing done for our road nearby because there wasn't enough safety. It wasn't just for me but for anybody else who's disabled. it was for families, mums kids, elderly who couldn't get across the road safely without being hit by a car coming from a four-way direction. It makes it ridiculous when you have situations like that here in the UK. When people have forgotten about us or don’t care. Because we don’t exist in their eyes.
I have gone on my mobility scooter into town where I am. And there are times when the pavement is so uncomfortable you feel like you're being thrown out of the scooter. I can imagine what it feels like for babies as well because they've been rocked. I guess it might feel nice.
They might feel like they are being rocked to sleep. But the adults and children who are being pushed in wheelchairs and scooters. They're feeling every bump going across uneven pavements is not comfortable.
we need some more smooth surfaces, helping to make it easier. It also helps people who are not unable to walk but need help. it keeps them safe. Whether you're disabled or not because you know the moms who have been pushing buggies and they are not safe sometimes. They have difficulty getting past trees walking down a road or they could be going down the road and there isn't a dropped curb. It will be difficult for either the buggy or mobility scooter or even the wheelchair when it's often blocked. There are lots here in the UK where people have forgotten that actually, we need to be heard and seen. All the drop down curbs needs to be available for everybody, not just people being lazy parking their cars in front of it.
But that's why I'm doing this.
This is why I've decided that I'm going to be doing videos from now on and I'll be doing podcasts and my blog office which is Sweetestmoondusts Style because it's about the style of life. And I want it to be stressed heard and it's not a lifestyle is a style of living. And I'm strongly wanting to get that across. Everybody needs to know that we are the same as anybody else. Over the next few months, I'm hoping to be doing them. Maybe a reading from one of my books regarding the poems and equality regarding that and saying what life is about as a person with the condition.
There are some great other people who I would love to interview and I will do via podcasts, which will be available only on the podcast and there'll be others that will be done via zoom that I'm hoping to get in touch with all sorts of things.
I'm just starting again after many, years of a break-up from doing things like what I used to do. I'm trying to get things sorted out a bit more, positive.
Thinking about the questions will bring out the person who you really are. Because being told who you are and what you can do does not make you the person you are.
Who are you?
You are a person, human with bones, blood, skin etc. You have your own thoughts and can do certain things that every person can do. Such as beating heart, breathing and thoughts of your own.
What defines you?
The things that define you are your own thoughts. Not just what can do. It's not what people think and what they think you should or be. So the disability does not define you either.
What do you want to do?
What are your dreams and aspiration is basically what this question is. Because those are really what you are. As your brain is where your own limitations are. And are what you have. And as a child, you don’t see limitations as a person physically or mentally. It is only when the people around you tell you what you can or can’t do. Then it is learning what the body has is the main limitation. You have to learn because if you set your mind to anything you can do it.
What can you do
This is the question that really should be what can your body do? Then decide what you can’t do. Because you are amazing!
What can’t you do?
What you can’t do is really what can’t your body do? Because these are the things that limit your life and what you want.
What do people think you can do?
Is really a question you should ask the people around you. Because you know what your own limitations are. Both physically and mentally. You should be able to do anything you want with aids to assist you in your dream because people should be educated to show that the disability does not define you.
What do you believe you can do?
This is where you can really think about what you want to do and physically actually do on your own or with help.
What do you expect to do?
This is where you have to be realistic because of what society expects of you no matter what you can do on your own.
What I am trying to say is that you are the only person to listen to. Because you know what you are capable of both mentally and physically. No one else is knowledgeable about your own body. Yes, they may know about the condition and what may occur. However, they don’t live with the condition day-to-day and get the tiredness. Or the pain that comes from day-to-day living with the disability. Which I have posted in
No matter what you feel like as a person and how you are living. You are important and valuable as a person being able to show that even with a disability you are worth a lot. But you have to get people to understand what you really are capable of.
I’m writing this because there are times that I’m fighting to actually show people what I’m capable of rather than being treated as a person who can not do anything for themselves. And this is why I started this blog.
Music has been an integral part of my life, in more ways than some and I have been lucky enough to discover many talented and inspiring mus...
I'm doing another quick post sitting in the cafe. Just chilling out waiting for a family member again. Nevertheless, it's been a...
It's been a while since I wrote and did anything. Lots of things have been happening around me mentally and physically. I haven't ...