Hello dear readers 😉
My name is Mary and I study Social Work (BA) in Cologne and started writing for my blog – Barry Scouts.
Since October 2012 I live in the most beautiful city in the world: Cologne!…and since then I live in freedom. Freedom is probably my favourite word! No, not that you misunderstand, I did not live in slavery before.
I grew up with my parents and spent 22 years with them.
In October I could finally move out. After graduating from high school, every young person is happy to become fledged and to build their own nest. You want to experience a lot, party and just be happy. That’s what I wanted too, absolutely!
But there was more to it than that. About the age of two I got the diagnosis spinal muscular atrophy. To explain it simply, this is a muscle disease. IMPORTANT: I do not suffer from a muscle disease, but live with this diagnosis!
For me it means that I can hardly move my body. I can move my feet millimeter by millimeter. However, after 3 to 4 millimetres of movement I am at the end of my strength. My arms are still the most mobile. I am still able to eat independently with a fork, but this takes a very long time and is also strenuous. I succeed in writing, but also only slowly and not long texts in one piece. By the way, I write my blog with the help of my smartphone, which I can use without problems and restrictions.
It feels like my arms and legs are too heavy for me.
Many people ask me if I can feel my legs. Yes, I am not paraplegic. I feel everything when I am stroked, kissed, tickled, pinched, scratched… Now you might have a rough idea of my disability.
Since October 2012 I have a 24-hour assistance (no carers!!!). Without assistance an independent and self-determined life would not be possible for me. They take care of me (shower, help me with toilets…), do the shopping and the household with me, cook with me and hand me the food (I hate feeding the word!), change my lying position at night, accompany me with leisure activities… I have about eight assistants and with them I spend 24 hours or 48 hours at a time, mostly they alternate every two days. I can do and leave what I want. I can shower, eat and go out whenever I want. That means freedom for me! That makes me incredibly happy.
Happy? Is it possible with a handicap? YES! I have a severe disability and am happy, find my life worth living and am grateful to my mother that she has not aborted me!!!!
What do I want to do with this blog?…I want to show you that I lead a normal life like everybody else. Where what is already normal?
Of course I am limited by my disability, but the biggest limits are set by the way of thinking of our society.
It already starts with the fact that everyone is surprised because I am a student or because I stay in clubs at night… I will report about enough such situations.
In my blog I will address different topics.
At the moment I’m dealing with sex. There are many reasons for this. Of course also because I love sex. Sex belongs for me to the most beautiful things of the world! I am in a relationship and therefore the topic sex is even more present. My boyfriend also has a muscle disease that is far advanced (ebenfaĺls as with me). This makes our sex life more difficult, but we still have one! We have to be able to talk openly about it in order to be able to live our sex life at all. Why? Because our assistants or special sexual assistants help us to live out our sexual needs. But what exactly is meant by that, I’ll tell you in the following blog entries.
I also noticed that disability and asexuality are treated equally. What is also frightening in my eyes is that many people with disabilities are ashamed of their sexuality and don’t want to talk about it because the topic of sexuality and disability is taboo. Even if you admit to yourself that people with a disability have a sexual life or wish for one, then unfortunately most people only talk about the fact that they simply wish for closeness, cuddles and love. Of course, everyone wants that too. BUT when I was single I can remember that I just wanted to fuck. Believe me, many others with disabilities do the same! So much for the topic.
That’s why I want and will call things by their name. For some it may sound provocative. If that should be the case, then I have reached my goal in any case. I want to shake people awake. I want them to “understand” that even people with a disability have needs, desires, fantasies, ideas…like everyone else in every respect.
This is certainly due to the fact that many people do not know anyone with a disability at all. And it is also certainly because there are too few people with a handicap who talk openly about themselves. I hope that this will change. That’s why I start talking.
I will address many topics. I hope it pleases and opens so some the eyes!
Of course comments are welcome! I would like to know what you agree with or what you see completely different. I am always grateful for new ideas and thoughts, so feel free to ask questions or suggest topics!
Have fun reading 🙂