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Hello community

orangeapple57
orangeapple57 Scope Member Posts: 11 Listener
Hello, 
I'm new here, I have a plethora of conditions but the main one that acts as my umbrella is Ehlers-Danlos hypermobility type. 

I've got a lot of experience in trying to challenge systems that are wrong or unlawful. 

I'm a strong believer in upholding the law and rules and justice. Especially as I've had little justice myself.

Comments

  • Albus_Scope
    Albus_Scope Posts: 2,807 Scope online community team
    Hey there @orangeapple57 and a big welcome to the community.  How're you today?

    It's great to have you here and I know there's other EDS people in the community, so you're not alone. :) 
    Albus (he/him)

    Online Community Coordinator @ Scope

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    Opinions expressed are solely my own.
    Neurodivergent.
  • woodbine
    woodbine Community member Posts: 11,277 Disability Gamechanger
    @orangeapple57 good afternoon and a warm welcome to scope hope you enjoy the forum.
    2024 The year of the general election...the time for change is coming 💡

  • Rosie_Scope
    Rosie_Scope Posts: 1,618 Scope online community team
    Big welcome from me too! I hope you'll enjoy getting to know everyone :) hope to see you around the community soon.
    Rosie (she/her)

    Online Community Coordinator @ Scope

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  • chiarieds
    chiarieds Community member Posts: 15,852 Disability Gamechanger
    Hello @orangeapple57 - & welcome to the community from a fellow EDSer; I also have the hypermobile type. I look forward to seeing you around the forum :)
  • orangeapple57
    orangeapple57 Scope Member Posts: 11 Listener
    Thanks everyone, just had a dog behaviourist round so feeling exhausted mentally, but proud of my achievements.

    I told him whilst he was here, the previous behaviourist just gave me handful of overwhelming information in handouts, he felt overwhelmed when I gave them to him too. I said my ADHD means; I'm doing a course on sensory needs, a level 2 course on specific learning disabilities, just finished a mental health awareness course, I'm part of a lobby group dealing with child education policy making and loads more. Yet I found the information the person gave me overwhelming. 

    He said he would be communicating in a much better neurodiverse and friendly indivualised way. I'm glad I found him and he respected the need for a different communication style. I've now got 5 things to do for two months consistently. Not 500 pages of disinformation. 

    I've just got through trying to get EASS to get involved with a festival location and found them utterly useless 😞 I'm frustrated that I came across so many health and safety issues that disabled disabled people yet each avenue said it's not their job.

    I've so many projects but I feel good each time I get somewhere, only issue is I feel I'm always having to make formal complaints....
  • Hannah_Scope
    Hannah_Scope Posts: 6,983 Disability Gamechanger
    That's great to hear @orangeapple57! I am so glad he is able to communicate with you in a supportive way :) 

    I am sorry EASS were not helpful, have you thought about CC'ing the local MP into your emails about the festival location? They may be able to help support too. 
    Hannah - She / Her

    Online Community Coordinator @ Scope

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  • orangeapple57
    orangeapple57 Scope Member Posts: 11 Listener
    My local MP is unfortunately as much use as most others and a chocolate teapot would be seen as superior sadly. I have had some luck persuading the council of the festival venue location to make some changes however those have not been communicated to me so I am unsure if the highly hazardous situation is resolved. As the festival told me to not speak unless spoken to (on the forum where I made these safety hazards public), I decided to give up. The hazards were; 2 red cords were absent from disabled toilets, the self closing doors were shutting with too much force and broke my wheelchair, the floor in the disabled shower (the only one on site for over 1k people) was tiled with wall tiles making it slippery, a broken mirror in the bathroom with a sharp edge, no hazard waste bin on site.
  • Hannah_Scope
    Hannah_Scope Posts: 6,983 Disability Gamechanger
    Maybe reach out to the council again and ask for a definitive answer / statement? I think using the term statement may pique their interest so to speak! 

    That's awful, not only hazards but damaging your property! I do really hope they resolve them! 
    Hannah - She / Her

    Online Community Coordinator @ Scope

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  • orangeapple57
    orangeapple57 Scope Member Posts: 11 Listener
    Thank you, yes I do need to chase them as they refused to get involved with anything they considered eass remit however eass will only get involved if I have proof of disability discrimination as opposed to general health and safety, the director of h&s won't have scope in this case either so fell to the council who tried to fob me off on building regulations control and eass so I went back to them and stated again the case. I opted to just agree to disagree that they wouldn't look at the 28 points of h&s but would only look into the slippery floor that I fell on... Just goes to show what little we have as options when it comes to getting things like this resolved.

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