When discrimination comes from “disability groups”…

I can understand that not all mainstream groups understand all areas of accessibility or inclusion.

I can understand that they haven’t thought about the barriers faced by disabled people.

And I can even understand how they might not realise that they need to change.

But there is no excuse for groups which profess to exist for disabled people yet who are actually excluding some.

I recently saw a comment from a disability group, to a mum who had politely mentioned that her son was unable to attend their group for people with disabilities as they did not have a toilet with a hoist and adult sized changing table. They knew about the need when they rented their building and made no effort to check out the possibilities of installing the required facilities before signing the tenancy agreement. And they now say it just isn’t possible to make any changes.

Instead of responding with an apology, or with a statement saying that they planned to try to make changes, they actually argued that her son was not excluded! All whilst agreeing that he was unable to come!

He can’t come due to physical barriers, but they say he isn’t excluded.

They then argued that they do lots of good things for at least a hundred other disabled people and that not all groups are for all people. Suggesting that this mum simply shouldn’t expect her son to be able to attend and was in some way detracting from the good that they do for others by raising it at all.

They then argued that “we have never advertised that we offer this service”. What “service?” The child in question needed a toilet! I am sure that most families expect toilet provision at all activities that their children attend. Provision of toilets isn’t seen as a “service”!

My own son has had similar experiences. A few years ago he was unable to attend a Christmas party for disabled children, which was run by a group which is partially funded by the local council, because they had not considered the needs of children who needed a hoist or bench to access the toilet.

A friend’s child has been unable to access activities for disabled children for years, due to a lack of provision for a BSL interpreter. And I know many others who have been made to feel as though they are being awkward by merely wanting to attend an event.

And this is happening to disabled people across the country when they try to access groups which are meant to exist for them.

Disabled children (and adults) should not be excluded from any groups, activities or days out, but it is particularly upsetting to be excluded from something which is actually advertised as being run for disabled people.

Disability groups need to do more than just run group sessions. And they need to do more than just arrange discounts for their group. They should be contacting venues and telling them that they need to improve. They should be defending those who struggle to leave their homes due to a lack of Changing Places toilet facilities. And they should be reminding venues and tourist attractions of their duties under the Equality Act. Mobile facilities can be hired for a day whilst venues look into arranging permanent facilities.

A local group “negotiated” free carer passes for their group at a local tourist attraction. However, they should have been telling that attraction that not offering a free carer ticket for a those who need a carer is actually discriminatory. Do check out this case taken by the incredible Doug Paulley.

This quote from Chris Fry, of Fry Legal, explains it, “By bringing his case, Doug has secured a change of policy which not only affects this venue, but also has a wide-reaching impact on sports and entertainment venues across the UK.”

It isn’t enough for disability groups to work for some disabled people. All too often the ones being ignored are the those who struggle to leave their own homes, and who have no opportunity to attend mainstream groups. Disability organisations need to be guiding venues to act lawfully and to be inclusive to all.  And they need to make sure that they only use words like “accessible” and “inclusive” if they actually are being accessible and inclusive to all disabled people.

Have you or your child or person you assist been unable to access a group or activity specifically set up for disabled people just because of a lack of suitable Changing Places toilets?

Or maybe due to other barriers, like not having an interpreter?

Or perhaps just due to the group not wanting to include someone with different needs?

Please do feel free to leave a comment with your own experience.

33 thoughts on “When discrimination comes from “disability groups”…

  1. We haven’t been to any disability groups at this point. Lyla is only 5 but I imagine that the time for her to participate in these groups will come around soon enough and I know that appropriate toileting facilities are going to be an issue. As if it wasn’t enough to have to fight for these facilities to be in public places, it’s a proper kick in the teeth to have to fight with groups who are meant to represent disabled people only to find them further disabling the very people they are meant to support.


    1. It is really hard to speak up against groups which are doing lots of good things for many disabled people. But unless people do, they cannot hope to change.


  2. Yes we did, even something that seems as simple as horse riding became difficult because one of my sons was wetting through.


    1. We never even tried to access Riding for the Disabled as it was a long drive and there would be no toilets within several miles. It is really sad.


  3. My daughter used to go to Whizz Kidz Ambassador club. They were based at a special school in Oxford so when they were there it was fine; but whenever they went on trips they were never anywhere that had a #ChangingPlaces 😢 so Tam didn’t go (that was back before I’d heard of #Mobiloo)! The group has closed down now


    1. Everyone would probably assume that a Whizz Kidz club had toilets for all. We are a long way from inclusion.


  4. For a number of years my son had been attending a holiday club for severely disabled children that was run by a private provider out of his school. The club moved premises and all of a sudden stopped sending me booking forms. I chased and chased these booking forms and kept being told they would be sent but they never materialised. Cutting a long story short I demanded to know why they weren’t sending me the forms….and it turns out the new premises didn’t have a changing places and my son and at least one other I know were no longer welcome. Rather than having the balls to address this issue and be honest with me they hoped I would just disappear! What followed was months of them refusing to deal with the situation, lying and ignoring me until I got their head office involved and threatened legal action. It was eventually installed nearly two years later but I simply couldn’t send my son there. I knew they didn’t want him and had been forced by the equality act to take him and during this time they treated us appallingly. I am also the mum you refer to in this blog! I approached that particular group for their Saturday club. In your blog you mentioned that they knew about the need when they rented the building. I don’t think that is the case. I think the guy running the service is absolutely oblivious to the equality act and his legal obligation which is shocking. He clearly is rather dim and doesn’t understand the definition of exclusion! Here in Dorset there are many groups and playschemes for the disabled. Unless you’re *really* disabled in which case it’s tough, you’re not welcome. The vast majority of these groups cater for what I call the ‘able disabled’.


    1. I was truly horrified at their comments to you online. I couldn’t believe I was reading such words. They clearly have no idea of the Equality Act. My heart ached reading it, because I know how hard it is to raise these things.


  5. Amount of times when there are family events or shows and they say free carer not a problem for you to come

    Well until I mention that I am I a wheelchair and all of a sudden it is like can his dad bring him, no I am a single parent ok what about a carer .That would be me then as I am his carer and his mum

    Places need realise that a parent can be disabled, in my case physically but still very able at the same time


    1. I feel so much emotion from reading those words. There are awful attitudes out there and neither you, nor your children, should have to keep facing them.


  6. We were supposed to be at ticfest this weekend for my sons birthday. A weekend festival for kids with TS and their families to get to meet others with TS. Run by tourettes action the TS charity. Got a call from the M.D. less than a week before saying she wasn’t sure she could “allow” Mal to attend! Spent 40 mins justifying why my son with severe TS should be able to attend a charity group for kids with TS! In the end she agreed to “allow us” to attend but if he had a meltdown or rage episode ( a huge part of TS) we would have to pack and leave! On his birthday. He was gutted. So told them politely where to stock it and took him camping instead. It’s also taken me 6 months of email battling them to have their ableist literature changed to encourage awareness and incornation spreading over trying to medicate the TS (which often fails) and further stigmatising the syndrome. I shall no longer be having any dealings with them.


    1. It is hard enough accessing mainstream events. When you face even more difficulties with groups specifically for those with disabilities it is even worse. And many others will go, have a great time and praise them for their inclusive attitude whilst having no idea about all those who were not welcomed. And that hurts too.


  7. Had so many problems with a couple of groups round here – one says the kids I PA for are too complex (severe autism, minimally verbal) even when I have offered to go as a 1:1 with the child!!
    Another group said I couldn’t take one of my boys on their trip unless we travelled on the coach – it was to the safari park and we wanted to go to the interactive bits and rides-the boy in question here is blind so the coach where he isn’t in control of the music and can’t actually see the animals but is on it for ages would’ve caused him (and probably everyone else) so much distress!
    I am now part of running a small charity to provide activities for kids with complex needs, we try to meet anything asked of us, looking for venues with changing places, and putting on coaches with wheelchair lifts. But if a child doesn’t travel well and parents want to use the car to meet us it’s no problem.


    1. That is truly hideous and feels more like they just didn’t want to include your boy. What difference would it actually make to them to simply meet with you on arrival?

      Your new group sounds wonderful though!


  8. There was recently a carers fun day that my family were invited to, I got in touch asking what toilet provisions they would have at the centre where it was held and after 3 days I got the answer that there would be none, so they were excluding not only the people who needed them but the actual carers they purport to help.


  9. My daughter is 19 and attends a special school they have twice arranged trips knowing there is no disabled facilities at the place one was at waterworld and my daughter was told she couldn’t go as there was no hoists etc and then to west Midlands safari which we found out when we got there they only have a baby change which is an old hut that is disgustingly filthy we had no choice but to use the floor and I had to hold a blanket up at the door as it didn’t shut


    1. That is beyond awful. How can specialist schools do such a poor job of ensuring that all their pupils are treated with respect? It is very sad. My son went to a mainstream school for a year and a half and has been home educated for the last six years. But I would have expected specialist schools to get this right.😢


  10. My daughter Lowri (aged 19) has been excluded many times to my knowledge and probably many without as well. It happens regularly with school trips, and lots of youth groups eg both Mencap and Whizz Kids…it’s the norm sadly and anything truly inclusive is a rare event! 😔


    1. The times we know about are probably just the tip of the iceberg. It is particularly sad when groups like that get it so wrong.


  11. Great post and very moving to think about the not-so-inclusive side of a child simply needing the use of a toilet. Similarly, I called specialist schools and was told “oh no, sorry, we don’t take children with PDA!” I was so very shocked and appalled. Where do our kids fit in if they are eliminated from fitting even within specialist settings? x


    1. I am saddened at so many stories of exclusion of disabled people. And at the lack of thought and kindness.

      Surely a specialist school should be asking about your child’s needs, rather than the diagnosis?

      Liked by 1 person

  12. My son attended a kids autism group in the east end of Glasgow. My son has PDA autism. They spoke to all parents individually and invited their kids to Combat city. They missed me out. I asked why and they stated my son was not suited to this activity as he might get too out of control. I did not agree this was the case but in the end they should not ignore me and speak to me about their reasons instead of going round every parent and miss me out. They then asked if I could keep my child away during December as their volunteer who usually deals with my son will not be attending. They felt they were not able to deal with him. They do not allow the parents to help supervise or I would have done it. I kept him away but still attended myself as my daughter attends too (non disabled sibling). This meant he missed out on all the festivities at Xmas. The kids all get a £10 Xmas pressie. The parents buy this and take it in to the club with a receipt and the parents get refunded. I took in two pressies, one for my son and one for my daughter. I figured he would still get one as it is not his fault he is not invited to the party as they do not have this volunteer there. They told me they would only pay for my daughters pressie and not my sons as he is not invited to the party. My son had done nothing wrong. They could not support him during December, so why is he missing out?. To make matters worse, this volunteer was at the party, so there was no reason to miss him out. I was in tears and I refused to take the refund for my daughter either if they cannot treat them the same. The other parents erupted when they found out what happened and they promptly paid for both my kids presents. I left the club after this as a disability club should be about inclusion. It broke my heart my son was being victimised because of his disability from a disability kids club. He now attends a wonderful club who are fully supportive, no problems what so ever.


    1. I am close to tears reading this.

      How on earth could they be so cruel? The Equality Act fails us in so many ways.

      I am very glad that you have found a better club though.x


  13. We have encountered this exact thing In West Sussex
    Not just Government funded Activities in the local area but also the Parent Forum that is supposed to be there to help us.

    My son is 12 and has a Complex physical disability and needs hoisting for toilets and has NO INDEPENDENT Mobility so needs STAY IN WHEELCHAIR activities.

    It is depressing wading through the tons of activities that are not ‘accessible’ to my son or don’t provide equal OPPORTUNITY and get very defensive when you tell them they are breaking the law.

    We have now ‘unliked’ their depressing pages on social media and we work hard on finding our own suitable activities.

    In the disability world the boxes are ticked for local government as they are meeting the needs of many, but my son is not a part of the ‘many’ and they prefer to ignore that because it makes them look bad.

    Liked by 1 person

    1. We have the same here.

      It is hard to believe that one group has organised an “accessible day” to the theme park that we are taking to court, and they are not hiring in a mobile Changing Places toilet. That same group advised the theme park that a mobile hoist in a small room would meet the needs of Adam, despite knowing it would not because I had already told them at Easter that we could not attend their Easter “accessible” day at that theme park due to not being able to use the mobile hoist.

      The worst kind of discrimination comes from those who loudly wave the flag for inclusion whilst ignoring the needs of those with truly obvious disabilities.


  14. Yes! My first ever experience of an activity day for disabled children was a beach event. I had never been to this particular beach before, only to find that the only way to get on it was to carry my four year old over approx 200m of deep sand. I was almost in tears by the time I reached the group. I am so lucky in that toileting is not yet a big issue for us but I have been to more than one activity day like this, advertised for disabled children, where for some reason physical needs have not been properly considered.

    Liked by 1 person

    1. It is so hurtful. It is like they were not expecting those with physical disabilities.

      A friend of mine had a similar experience at a party for disabled children here. She arrived, carrying her child as she was upset and wouldn’t go in her chair. Yet nobody offered her a seat and she stood watching the other parents chat whilst their children played on the bouncy castles and ran around.


        1. She was devastated and has not taken part in any activity for disabled children since. She felt more alone at an event FOR disabled children than she ever had at a mainstream one.

          And it happens too often.


  15. Actually by a Riding for the Disabled group . As this group didn’t have a hoist and would not let us transfer by lifting (which we had at another group, and we accepted all liability) he was not allowed and the new group said as he cannot weight bear he can’t ride. And then the Physio said ‘ as he has a progressive condition it’s probably not worth it.’

    So we got our own horse on loan, Rambo. And some insurance. We lift our son on and off ourselves. He loves it.

    Liked by 1 person

    1. I have heard similar things from others about RDA groups. Our nearest one had no hoist and is too far away when they have to usable toilet facilities.


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