Self advocacy group Speak Up Sutton – Speak Up!

Read how we’ve linked up with self advocacy group Speak Up Sutton and the campaigning work they’ve been doing…

Speak Up Sutton, a self advocacy group based in South West London, have been doing some fantastic work in developing the work of the Stay Up Late campaign and it was lovely to meet the group last year and attend a couple of workshops where they looked at how they might be able to change things.

They’ve now produced this fantastic report [download as PDF] .

self advocacy

We’re really grateful to Speak Up Sutton group’s hard work, we really do get excited when we hear what work people are doing round the country, this is the only way that we can hope to make change happen by local groups creating pressure fro change and keeping positive.

As I read the report it also got me feeling annoyed too. There’s some really good things that jumped out of their findings but there are also some things that aren’t so good.

Here’s some quotes from the group:

“I think it’s really rotten that people have to go home early”

 

“It seems like some staff want an easy life!”

 

“If you want to go it should be up to you, not the carers,

what time you go out. The carers should be there to help you.”

 

“Staff shifts should finish at the right time so people

can go to all of their activities.”

 

I just love that last quote “Staff shifts should finish at the right time” – true wisdom.

Thank you Speak Up Sutton!

The things that really bother us about their findings

The reason the following comments really bother us is that they reveal the continual power imbalance that people with learning disabilities face.. The people being supported are being denied their rights and being let down by the very people who are meant to be supporting them:

“This is what we’ve always done.”

There’s often this sense that people say “This is what we’ve always done” – how difficult must it be to live in a setting where you’re aware that this is the culture?

“It’s difficult for staff who work a lot of hours and have low wages”

There was a comment that it’s difficult for staff who work a lot of hours and have low wages. This really points to a poor culture by the organisation providing the support. We acknowledge that it’s not the best paid work in the world but it’s a great job if you can get it too, if you’re the right kind of person. For me this comment creates a depressing picture of a disinterested support worker who gets in to work in the morning and thinks “how can I do the least required today?” and can’t wait to finish at the end of the day. Instead of those support workers who come in and think “how am I going to make every minute of today great for the person I support?”

(Read our blog post about our views on Valuing Staff).

“Residents need to think ahead about what they want to do”

I think the onus should be on the support team to help them do this. We simply can’t blame ‘the residents’ for not being organised and forward thinking enough to plan their lives. That is beyond unfair.

“More events to go to that are on at the right time.”

This is becoming a common thing and we totally understand why. There are great club nights up and down the country which are run by small teams of enthusiastic and hard working people who get despondent when they see most of their clubbers leave by 9pm. The answer? Start the evenings earlier.

self advocacy

The thing is that is not the answer! At Stay Up Late we’ve talked about what to do to try and encourage this not to happen as we see it as the start of the slippery slope. However, we don’t want to criticise those clubs who are trying hard to put good nights on for people.

We’re going to think more about this and see what ideas we can come up with to try and support clubs to campaign more to get people to stay.

And as for putting ‘more events on at the right time’ – well the next time you want to go to a Beyonce gig let me know and we’ll give her a ring and see if she’d mind finishing early!

“Residents need to show respect and be reasonable”……..

self advocacy

………….. sorry for the pause there, I just spat coffee all over my computer screen. What the €!*%$?! No they don’t, they really don’t!!

I really think that the ‘residents’ have every right to be unreasonable and they should be the ones to demand to be treated with respect. I have no idea who said this but I’d love to invite them to a focus group. In fact if you think about all the opportunities denied to people by inflexible services I think people who use those services have every right to tip the balance of the ‘scales of unreasonableness’ for many years to come!

“Their evening activities include watching TV, computer games and listening to music”.

Another comment was they like to Stay up Late doing jigsaw puzzles. Not only is this comment completely missing the point, it also infantilises the ‘residents’ (now they’ve got me using that word!). Stay Up Late is not about time you go to bed. Staying Up Late is all about being part of nigh time culture and the opportunity to socialise and see your mates.

To say ‘they can watch TV and play computer games’ is extraordinary box ticking by people who aren’t being encouraged to challenge the culture they work in. This probably stems from poor leadership, and poor training, and a complete misunderstanding about what we’re campaigning about. Stay Up Late is about choice! The choice to decide what time you go to bed.

“We think this shows that members would go out more if they had more opportunities”

This is classic stuff, why not blame the not-for-profits arts groups and volunteer organisations for not putting enough things on (at the right times to suit the support workers). I’m lucky enough to live in a town which has quite a few pubs, a cinema, a park, community centre, theatre, church, comedy club….etc, etc, etc. Actually it sounds like a lot of other towns I can think of. The point is there are probably more than enough opportunities where everyone lives, if the support to access them is right.

“Some of them said they are ready to support their ‘clients’ as long as they are paid properly for their time”

I don’t know where to start with this one. As I’ve said earlier I know it’s not the best paid work but how will anything ever get done with staff who have this attitude. I wonder what the imaginary hourly rate is that they have in mind which will oil their gears in to motion?

“Some of them found it hard to say why they had to be taken away”

So here we have people with learning disabilities being taken away from a night without anyone even explaining the reason to them, no matter how unfair.

“None of the residents have said they want to stay out later than 10pm”

Perhaps if they knew what the world was like after 10pm they might ask to!

“At the moment the residents have to plan their activities around the staff shift”

I don’t need to say anything about how upside down this statement is. Rotas should be used as tools that are able to make stuff happen, not the restraint that prevents things from happening, probably causing people mental health issues as a result.

self advocacy

It’s a bit like a hammer. A hammer is really good if you want to make something out of wood and nails. A really useful tool. It’s also really effective if you want to rampage round your neighbourhood smashing car windscreens.

It’s not the hammer’s fault that the cars get smashed up. It’s how it’s that tool is used.

“The carers feel they can only support their clients if they are paid for all the hours they work.”

So why aren’t the rotas being organised in a way that enables this to happen? After all if someone has been out until midnight they might appreciate a lie in the next morning. Then the support staff can have a lie in too and come in a little later. It’s about planning! It’s also about trying make life ordinary.

What could make a difference?

In the report the self advocacy group also reflect on things that would make a difference for people:

  1. Managers putting flexible hours in contracts and for the staff to get good leadership and support from their managers.
  1. Employing more staff that are fun and supportive.
  1. People with learning disabilities need to complain so managers know
  1. Ask people what they want
  1. Listen to them
  1. Let people have the right information.
  1. Help people to connect up with other projects in their community
  1. Look at support plans
  1. Check contracts
  1. Talk to the Care Quality Commission
  1. Just make stuff happen!!

‘Reasons to be cheerful, 1,2,3’

There are a few things in the report that gave us hope, signs that some service providers to get how to support people well.

  1. “They enjoy staying up late and have no problems.”
  2. “One of them said he goes to the pub for a drink every week and stays until 11.30pm.”
  3. “They have good carers who help them when they need it.”

That’s it though, only 3 reasons for us to be cheerful, there’s a lot of work to be done!

So what next?

We’d love to do more work with Speak Up Sutton to keep things moving with this, and other self advocacy groups too. Their report ends with some glimmers of hope, things that could bring about positive change:

  • “If some homes can manage to be flexible with shifts and plan ahead, why can’t all homes do the same?” – That’s a really good question and we’re keen to talk to the good homes to find out how they do it, and share their secrets. [See our post about our interview with GettaLife in Coventry]
  • “We agree that staff should sign an agreement to help people stay up late” – in fact why not make it a question when people are recruiting their staff? That is assuming that they are involved in recruiting their support staff!
  • “Normal life does not finish at that time.”

I’m always worried about using the word ‘normal’ as I don’t really know what it means. You only have to look at some members of my family, who you’d hardly class as normal! I prefer the word ‘ordinary’. This is about supporting people to lead an ‘ordinary life’. That means that they will need to be listened to and support will need to be flexible.

They’ll need to be given information, that could include going and trying new things out and seeing how they go, and staff being patient when trying new things. It’s also about striking a balance. We’re not saying that people should stay up late every night, but once a week? That would be good wouldn’t. And staying up late doing jigsaw puzzles doesn’t count!

It has however given us an idea for a new line in our online shop though!

self advocacy

And what with all this talk of ‘The Residents’ it brought this little tune to mind:

 

Are you involved in a self advocacy group?

Get in touch and get campaigning with us.

 

Leave a Reply

  • Your email address will not be published. Required fields are marked *

  • You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>

Copyright © 2018 Stay Up Late. | Web Strategy and Design by Mart Gordon