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Awareness Week 2018 - Rosie's Story

25th October 2018


Rosie's Story

Throughout my life SHINE, the people who I’ve met through SHINE and the people who work for the charity have always meant a lot to me. SHINE has meant different things to me at different points in my life but it has always meant a great deal to me and always been hugely positive.


Something I love about SHINE is the facebook groups and the meet-ups and residentials for members who are similar ages. It has definitely helped me make more friends my own age and meet so many amazing people who also have Spina Bifida/Hydrocephalus. I have met some of my closest friends through SHINE and have amazing memories of the meet-ups and residentials I’ve been on. Something else that means a lot to me about the friendships I’ve made through SHINE is that we all support each other, and this interdependence is something I value very highly.


Another important aspect of SHINE for me is that because all the members have Spina Bifida/Hydrocephalus and all the staff work so closely with people with Spina Bifida/Hydrocephalus it is seen as normal and never represented as overly negative, just as a realistic part of everyday life. Because of this I always really like that within SHINE we are all seen as individual human beings who are more than just our impairments. It has also always been hugely important to me that within SHINE I have always been encouraged to be proud of my identity as a Disabled Person and to see it as a positive thing, even when that feels difficult to do.


Something I have always found really positive about SHINE is that everyone has similar embodied experiences or at least knows about the embodied experiences very well through working for SHINE even if they don’t have SB/H themselves. This means we can ask each other for advice when we need it; both about life with Spina Bifida or Hydrocephalus and how to cope with certain situations that non-disabled people or people with different impairments won’t experience (or won’t experience in the same way). It is also hugely important to me to know that advice from SHINE staff and members is more likely to be relevant and useful for SB/H specifically than generic advice from other sources would be.


Another important aspect of what SHINE means to me is the understanding. Because everyone either has embodied experience of or works with people who have embodied experience of Spina Bifida/Hydrocephalus everyone understands what it is like, both the good and the bad. This means that no one judges each other and we all support each other. This links back to the theme of acceptance and community. In SHINE I feel able to talk a lot more openly about living with Spina Bifida than I feel comfortable doing around people who do not have the same understanding. This has always really helped me deal with things growing up and means a lot to me.


In conclusion SHINE has always and will always mean a great deal to me in many ways, both big and small. I have gained so much and had so many amazing experiences with friends I would not have known other wise and I am incredibly grateful for that. I feel that my experiences with SHINE are a perfect example of Disability Gain.


If you've been affected or inspired by Rosie's story, you can help Shine to support more people just like her by donating £5. Simply text DOIT05 £5 to 70070, your donation will help pay for an information pack containing vital information for new members at a crucial stage in their lives.

Shine welcomed 772 new members in 2016, that's a total of £3860 before we've even began to deliver services. Your small donation could make a big difference.

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