Being disabled and a wheelchair user I often find that people see my disability rather than the person I am and what I can contribute to society. Over the years I've had people talk about me to my husband or my friends while I'm actually sat there. Assuming that my disability is compromising more than just my ability to move without pain and falling over. How rude is that? I have been known to comment that my mind is sharp and my tongue sharper. Often the comment goes over their heads. I've also had people question my ability as a leader in the Scout movement because of my disability. I was annoyed by this as the person concerned should have known better, and you know what? I proved them wrong. I'm a great leader, I write a fantastic programme with the leaders of our beaver colony. Parents often compliment us on what we do for the young people. I've had issues with accessibility which resulted in me not being able to take part. I was hurt and angry as it still seems the elephant in the room is my disability and my wheels instead of legs. It raised questions about inclusion and accessibility which are 2 subjects I am extremely passionate about.
Since the negative situations arose positive steps have been made and my opinion was asked. ....only at group level but that's the front line level where I can help make scouting more accessible for leaders and more importantly young people who are differently abled, after all scouting is for all regardless of ability or financial constraints.
Fast forward to this weekend. I'm a County Beaver Leader , a role which I'm proud of. It enables me to support districts and leaders across the whole of a county. I attended a programme forum and how people in middle management roles and higher can support the leaders on the front line delivering these amazing opportunities for young people. For once my disability wasn't an issue. People spoke to me.....yes! You have no idea how good that made me feel. On workshops which involved moving around to speak to other people and form groups, people came to me. I was included, not ignored and my opinion was valued. I came away having met new people with the same interests and passions and with ideas that I can take back to the teams I am part of.
Great things can happen when people see past the obvious, get to know the person. You never know that person may be able to bring skills, and opinion, a different and valued view point to the table.
I'd love to be able to use my experiences and knowledge to make inclusion and accessibility second nature so that more young people and adults with challenges from physical disabilities to learning challenges can enjoy scouting and gain new skills and experiences.
Remember. ....not disabled just differently abled.
(Disclaimer : these are my own views and not those of the organisations I am part of)
Monday 20 November 2017
Wednesday 1 November 2017
Breakfast at Parliament
Today started at 6am for me when the alarm went off for me to get ready to attend a meeting at the houses of parliament about multi-morbidities and mental health. Putting it simply it was about how long term health conditions affect mental health and how research and support can be improved.
For me mornings are difficult, just getting out of bed is a struggle with stiff and painful joints but I felt it was important for me to attend today and share my story and experience. Living with long term health conditions definitely affects our mental health but there is little support available or sufferers are not told of any help available.
The event was well attended despite it being early and with other events happening at the same time . I met some amazing and inspirational people including a couple who spoke about their experiences of how Parkinsons Disease and the medication had affected their mental health and the mental health of everyone in their family. You see its a vicious circle. Living with a long term and painful condition like Rheumatoid Arthritis, Fibromyalgia, Ehlers-Danlos Syndrome (the list is endless) affects how we feel mentally. Many sufferers battle depression and severe mood swings. Medication can cause depression too. We're frustrated and angry and upset and this also has an inpact on those closest to us, our loved ones, partners and children.
When you're diagnosed with a long term condition you see a specialist or a group of specialist's but at no point are you asked how you feel, or are coping, or how the diagnosis affects those around you. My gorgeous now 9 year old son lives with chronic pain. He has had some really difficult times where he's trying to understand what's happening to him, the frustrations and anger. His mood is up and down. One minute he's my happy smiley boy and the next he's teary or frustrated and snappy. I've explained to our gp, his paediatrician and physiotherapist but no one has offered help or pointed us in the right direction to get help. The school referred him to a home school support worker and he had 5 or 6 sessions with her but that was it. There was no coping mechanisms or support for parents to support our child.
My experience is similar to my son's. I get frustrated and feel 'down' about my situation, my condition and the fact it's a life long condition. I'm not going to get better, I've got to learn to manage it and I will continually learn to cope. I know my condition and my moods affect those closest to me. When I'm in so much pain I can't get out of bed, when I'm wrapped up in a blanket and crying, when I snap at my loved ones for not understanding, when medications cause mood swings from highs where the Meds are helping to the deep lows when you're weaned of steroids or certain pain relief because it's not good to be on them long term. I feel it's important that when a person is diagnosed with a long term condition that support is available for those people in respect of their mental health and coping mechanisms.
I do try to practice mindfulness and meditation. With all my children we tell day stories about our day before bed time but we make a point of saying the positives and there has to be at least 3 positive things. It doesn't matter how small these things are as long as they are positive. Some days my positive is that I got dressed in the morning or I managed to brush my hair. They're still positives and still achievements. Today my achievements are massive
1) I went to the houses of parliament
2) I spoke about my experiences to hopefully make a difference for other people
3) I snuggled on the sofa with my 3 amazing children and hubby.
I'd like to thank Arthritis Research UK for the opportunity to attend this mornings breakfast meeting. Being involved and trying to make a difference raising awareness helps me. I feel useful where arthritis and pain has taken so much away from me.
Let me know your 3 positives
For me mornings are difficult, just getting out of bed is a struggle with stiff and painful joints but I felt it was important for me to attend today and share my story and experience. Living with long term health conditions definitely affects our mental health but there is little support available or sufferers are not told of any help available.
When you're diagnosed with a long term condition you see a specialist or a group of specialist's but at no point are you asked how you feel, or are coping, or how the diagnosis affects those around you. My gorgeous now 9 year old son lives with chronic pain. He has had some really difficult times where he's trying to understand what's happening to him, the frustrations and anger. His mood is up and down. One minute he's my happy smiley boy and the next he's teary or frustrated and snappy. I've explained to our gp, his paediatrician and physiotherapist but no one has offered help or pointed us in the right direction to get help. The school referred him to a home school support worker and he had 5 or 6 sessions with her but that was it. There was no coping mechanisms or support for parents to support our child.
My experience is similar to my son's. I get frustrated and feel 'down' about my situation, my condition and the fact it's a life long condition. I'm not going to get better, I've got to learn to manage it and I will continually learn to cope. I know my condition and my moods affect those closest to me. When I'm in so much pain I can't get out of bed, when I'm wrapped up in a blanket and crying, when I snap at my loved ones for not understanding, when medications cause mood swings from highs where the Meds are helping to the deep lows when you're weaned of steroids or certain pain relief because it's not good to be on them long term. I feel it's important that when a person is diagnosed with a long term condition that support is available for those people in respect of their mental health and coping mechanisms.
I do try to practice mindfulness and meditation. With all my children we tell day stories about our day before bed time but we make a point of saying the positives and there has to be at least 3 positive things. It doesn't matter how small these things are as long as they are positive. Some days my positive is that I got dressed in the morning or I managed to brush my hair. They're still positives and still achievements. Today my achievements are massive
1) I went to the houses of parliament
2) I spoke about my experiences to hopefully make a difference for other people
3) I snuggled on the sofa with my 3 amazing children and hubby.
I'd like to thank Arthritis Research UK for the opportunity to attend this mornings breakfast meeting. Being involved and trying to make a difference raising awareness helps me. I feel useful where arthritis and pain has taken so much away from me.
Let me know your 3 positives
Subscribe to:
Posts (Atom)