These are the messages, thoughts, and findings of Hazzel, a local resident of Camden and a citizen social scientist.
Hazzel conducted research about how the Camden Community Wealth Fund can be more accessible and inclusive to disabled and neurodivergent residents.
This research involved one-hour, semi-structured interviews which were transcribed and analysed. Interviewees have been given pseudonyms to ensure that they remain anonymous.
From interviewing people working with, or part of, the neurodivergent and disabled community, key themes identified were individuality, independence, loneliness, mental health, and lack of awareness and training. These themes will be explored in this zine.
In the United Kingdom...
As of 2023, there were 5.1 million disabled people in employment in the UK, an increase of over 2 million since 2013.
For people aged 16 to 64, disability employment was 53.6% in July to June 2023, compared to 82.5% for non-disabled people.
Disabled workers are more likely to be self-employed compared to non-disabled workers.
In 2023/2024, 13.3% of disabled workers were self-employed.
The disability employment gap increases with age.
(Office of National Statistics, 2023)
In the Borough of Camden...
8.3% of residents in Camden were ‘disabled and limited a lot’ in 2021.
An additional 9.4% of residents were identified as ‘disabled and limited a little’.
(Census 2021, Office of National Statistics)
Individuality
Throughout my interviews, there’s been an emphasis on seeing disabled / neurodivergent people as individuals.
Disabled / neurodivergent people feel that they tend to be labelled and put into a box, where they are treated the same as those with the same disabilities as them without consideration that each person is an individual with different challenges.
[We should be] looking at [disabled people] as individuals rather than the challenges that they bring.
Amanda Support worker and parent
Even if a person has the same disability as another, they may experience different difficulties. They will also have various preferences from one another, like how they may prefer to communicate and socialise with others - just like any typical person would.
Some of them may share similarities, but there is so much complexity… They’re each like an entirely different universe to deal with.
Andrew SEND teaching assistant
These labels put on a disabled person have led to generalised solutions to their more complex problem. This may or may not help the person with their challenges.
Therefore, it is important that each disabled / neurodivergent person receives support that is specialised for their needs.
Individuality also comes down to the support [disabled people] are provided.
Whether for work, for school, or their daily activities, it is important for their support to be bespoke and be designed for the individual person.
Mary Head of a disability arts organisation
Image 1 – A picture with some doodles of the café area in the Greenwood Centre. An inclusive place in Kentish Town which provides various disability services.
Independence
For some disabled/neurodivergent people, having some independence is important for them. Many disabled/neurodivergent people, especially youths, tend not to be given much independence as others around them worry too much about their wellbeing.
They tend to kind of not give [disabled people] quite as much freedom as they probably need at this age and stage of development.
Christoph
Disabled youth worker
From his work with disabled youths, Christoph observed how they enjoyed the freedom they were given for projects and activities they took part in.
He believes that giving them some independence will help them feel more confident in themselves and their ability to do things themselves.
I think most enjoy things which give them a little bit of independence… They kind of thrive the most when they’ve got the right amount of like, ‘do you feel like being treated as an adult?’ but with the right level of support.
Christoph Disabled youth worker
Mary, who runs a disability arts organisation, also found that by giving her disabled artists creative freedom and giving them the independence to create the artwork that they want, these artists gained more confidence in both their work and in their daily lives. This has allowed them to be more self-assured and feel more confident in their daily decisions.
We often find that just the idea that they can make decisions themselves empowers them.
Mary Head of a disability arts organisation
Image 2 – A picture with doodles of an inclusive dance event with disabled / neurodivergent performers held by LISA.
Loneliness
A lot of the social services in the UK have been eroded away and ever since COVID-19 lockdown, people have felt disconnected from their neighbours and community. The pandemic has made the importance for better social services more apparent. This is especially true for a lot of disabled / neurodivergent people who suffer from loneliness.
[Disabled people] might struggle to make friends, so they have no social support network so suddenly like, because of their learning difficulty, indirectly, they might be developing a certain kind of sense of isolation or mental health problems.
Christoph Disabled youth worker
Even now, he has very few friends… Socialising and understanding the social cues has always been quite difficult for him.
Support worker and parent
Some may also either find it difficult to go to places offering social activities or to make time for them. They might also find it difficult to communicate and socialise with others which can worsen their sense of loneliness.
Amanda
Additionally, the lack of social activities for disabled / neurodivergent people over 25 years old is concerning.
In my interview with Sylvia, she stated how there is a lack of activities for her son who is now over 25 years old. She mentioned how her son used to attend different clubs however he could no longer attend them as these were only for those below 25 years old.
Now, she feels that he doesn’t have much to do and doesn’t have the chance to socialise with others. Due to his disability, he tends to get irritated whenever he doesn’t have a structure to his day, so having no clubs to attend, she fears that he’ll constantly get bored and irritated.
This sentiment was echoed by Christoph who mentioned that he lets some members participate even if they’re older than 25 as they have nowhere else to go and nothing to do.
However, he also knows that he’ll have to eventually let them go to make space for younger members to join.
They are kind of cut off at 25. There’ll be access to all kinds of other areas of support that families or young people get which kind of drops off at 25… There’s really not a lot for them after 25 and it’s very sad.
Christoph
Disabled youth worker
Mental Health
Mental health is an essential topic to discuss due to the current mental health crisis. Comorbidity, having more than one medical condition happening at the same time, is prevalent in disabled / neurodivergent communities. Some have their disability while also struggling with their mental health which can exacerbate their challenges. However, for disabled / neurodivergent people, their mental health tends to be overlooked. People recognise a disabled person’s learning difficulties, but they don’t recognise that these problems could also be associated with their mental health.
People kind of recognise them as learning disabled or autistic and don’t recognise them as having any kind of mental health challenges.
Christoph
Disabled youth worker
Mental health is also linked to loneliness. As previously mentioned, disabled / neurodivergent people may have difficulties communicating and socialising, causing them to have fewer friends and support systems.
This leads to loneliness which can cause poor mental health as they have no one they can trust to support them.
It is essential to mention that parents of disabled / neurodivergent people also experience poor mental health. For a lot of parents, it is difficult to juggle work, caring for their child, and chores. As a result, they tend not to have any free time for themselves. This causes loneliness due to their lack of socialisation, which can result in poor mental health.
They had safeguarding concerns for my son, but there were no concerns for me. I got no support.
Amanda Support worker and parent
Sylvia also feels that it is important that more services and better support are provided for parents with a disabled / neurodivergent child. Amanda, who works with parents of disabled / neurodivergent children, mentioned, “We often get the new parents that call us are so distraught, we all know they just need to offload.”
Therefore, it is essential to both consider the mental health of the disabled / neurodivergent person and their parent or carer.
A contributor to improving one’s mental health is having independence to make key decisions.
An example from WHO found that people with mental health conditions tend to be forced into specific care pathways where they didn’t have a say in their own recovery, shattering their confidence to make basic decisions (World Health Organization, 2022).
This is why it is important to have a balance between the amount of guidance and freedom to help build a person’s self-confidence.
Image 3 –A picture with doodles before the LISA dance event.
Image 4 – A picture with doodles of the Greenwood Centre, a facility which delivers disability-friendly services and activities.
Lack of Awareness and Training
Although many places emphasise inclusivity, disabled / neurodivergent people still tend to be left out or treated unfairly. Andrew, a teaching assistant who looked after SEN kids, spoke about how SEN children were treated in their secondary school. Even if these teachers were trained on how to teach SEN children, they did not fully put what they’ve learned into practice.
Many of the teachers would dismiss the fact that some students had SEN and would treat them the same as every other student.
Andrew
SEND teaching assistant
Similarly, Amanda mentioned how when her son was in primary school, she would inform them about his specific needs. However, the school didn’t listen and blamed it on her son and her for being disorganised.
I was giving a lot of information to the school, and they weren’t necessarily using it which is quite upsetting. And when they make comments then in progress days and you think, well, if you’d have read the information I gave then you’d understand why that happened.
Amanda Support worker and parent
She continued by telling me the story of how her son was later treated during his apprenticeships. One of the jobs he took on was a construction apprenticeship where he hoped he would learn various skills in construction, however they did not support him during his work nor taught him any kind of skill. She mentioned how he came home one day and told her that he was only assigned to pick up cable ties for the whole day.
He was just used as cheap labour. We prepare the young people for going out to work, but we’re not preparing the employers.”
Amanda Support worker and parent
For organisations and employers, there are some challenges that some may face even when trying to be more inclusive. Here are some suggestions for ensuring that organisations are inclusive:
1. Being clear about what type of accommodations are available for disabled and potential employees –sometimes disabled people aren’t sure about the type of support they can access, so they worry about asking for help. Therefore, having a list of examples can help a person with asking for accommodation needs.
2. Ensuring that the support disabled employees ask for continues to be provided throughout their employment.
3. It is important to be flexible with time and work location as disabled people may need to prioritise appointments or need to work from home on certain days due to their condition.
They want to get it right, and sometimes the fear of getting it wrong stops them.
Stacey SEND employment officer
References
Office for National Statistics. (2023). How life has changed in Camden: Census 2021. [online] Available at: https://www.ons.gov.uk/ visualisations/censusareachanges/E09000007/ [Accessed 10 Sep. 2024].
Adam, M., Brown, A. and Diong, J. (2023). Employment of disabled people 2022. [online] GOV.UK. Available at: https://www.gov.uk/government/statistics/the-employment-of-disabled-people-2022/employment-of-disabled-people-2022#about-these-statistics [Accessed 10 Sep. 2024].
World Health Organization. (2022). Autonomy in Health decision-making - a Key to Recovery in Mental Health Care. [online] World Health Organization. Available at: https://www. who.int/news-room/feature-stories/detail/autonomy-was-the-key-to-my-recovery [Accessed 10 Sep. 2024].
CAMDEN COUNCIL CITIZEN
SCIENTISTS-IN-RESIDENCE 2023-2024
Following many successful collaborations, including the Good Life Euston and Euston Young Voices projects, Camden Council have teamed up with the Institute for Global prosperity at University College London to deliver an innovative ‘Citizen Science-in-Residence’ programme for the year 2023-2024. This zine is one of the outputs from this programme.
Seven local residents were employed by Camden Council to conduct research informed by their own lived experience for the benefit of developing new council policy ideas and initiatives. As part of their residency at the council, the cohort completed a bespoke 12-month training programme with the UCL Citizen Science Academy.
Five of the citizen scientists-in-residence were connected with the development of the council’s new Community Wealth Fund Initiative and the remaining two conducted research to help inform the Tenant Engagement Programme. Through practical training and supported fieldwork using qualitative research methods, the work done by the citizen scientists-in-residence is part of a wider goal to promote citizen-led policy making and connect residents with local government.
ACKNOWLEDGEMENTS
Thank you to UCL and Camden Council for giving me the opportunity to work on this special project and for helping me develop into a Citizen Scientist. Thank you to Joseph Cook for the support and training throughout the whole year. This project would not be possible without your guidance. And thank you to everyone in my Citizen Science cohort for all the laughs, you have definitely made this whole experience more interesting and enjoyable.
The UCL Citizen Science Academy would also like to thank all those at Camden Council that provided support for this project, including those in the Participation and Community Wealth Fund teams. Additionally we are grateful for the input from a variety of local organisations who have hosted us throughout the year, including Luminary Bakery, Google, Training Link and Somers Town Community Association.
