48 percent of people with a learning disability and / or autism are at their happiest when in good company, a survey by Learning Disability Today (LDT) of over 100 people finds.
In the third part of LDT’s ‘Change It Up’ campaign, participants were asked about how to improve their quality of life. From questions about their favourite company, to preferred activities, to ambitions about the future, the survey’s respondents told LDT about how they can live their best lives with the right support.
LDT’s findings
Participants were asked when they feel happiest, with almost 50 percent of responses citing good company as the key determiner of happiness.
These findings come during a time in which many people with learning disabilities and / or autism saw their quality of life change almost overnight due to the coronavirus pandemic and the accompanying lockdown restrictions. Increased reports of lockdown loneliness left people feeling isolated and alone, often unable to see their friends, families, and pets who are usually so integral to their wellbeing as LDT has found.
‘Doing hobbies’, ‘going out’, and ‘being active’ were all given by respondents as determiners of a happy life, things which the coronavirus pandemic may have affected. Initial government guidance on exercise said that people must stay within their local area and exercise for no more than an hour each day. Many people with learning disabilities and / or autism significantly benefit from being outside for longer than an hour a day, and may need to travel beyond their local area to access quiet, safe, secure spaces that meet their needs. They may also need the support of a support worker outside of their household.
The government updated this guidance, clarifying that “if you (or a person in your care) have a specific health condition that requires you to leave the home to maintain your health – including if that involves travel beyond your local area – then you can do so”.
‘Being valued’ and ‘feeling empowered’ were answers given in response to the prompt about when participants feel happiest. ‘Being empowered’ appeared again when 24 percent of respondents highlighted it as an aspiration for the future.
The idea of empowerment being conducive to happiness highlights that many people with learning disabilities and / or autism desire to have full control over how they live their lives – just like anyone else. This may be reflected in the choices they make. LDT’s research found that 82 percent of people with learning disabilities and / autism choose what they eat for dinner each night, a choice which many of us take for granted yet some are nonetheless denied even if they are deemed to have the capacity to do so.
Empowerment looks different for everyone. If someone wants to be ‘looked after’ in the future – as one respondent did – that is still empowerment. People with a learning disability and / or autism have every right to find out what empowerment means to them.
LDT spoke with many people who aspired to teach or support others with conditions similar to their own. One person aspired to coach others with autism, something which she was discouraged from doing due to being autistic herself, reflecting the ignorant attitude that people with a condition are not suited to support others with it. An ardent supporter of the Labour Party, another person interviewed by LDT expressed his aspiration to work in politics.
In a society that often values people’s “worth” by their productivity, organisations supporting people with learning disabilities view employment as the ultimate goal all too often. One person aspired to ‘have a dream holiday’ and others wanted to have a pet. One person interviewed by LDT has a pet fish in the house she shares with two others but ultimately wants to get a hamster when the trio move to a new house, and moving house was a dream shared by other respondents. Another respondent dreams of starting a family with her husband.
Whilst LDT’s findings reflect the wishes of many people with learning disabilities and / or autism to have a job that this is by no means an aspiration we should assume everyone possesses. ‘To be listened to as an individual’ and ‘be known for what I can do not what I can’t and to take out the dis from disability” were both answers shared with LDT.
People surveyed by LDT showed an overwhelming preference for being surrounded by friendly, respectful, positive individuals. One person singled out listening qualities, echoing the sentiment of LDT’s findings that ‘being heard / listened to’ is the top determinant of whether someone feels cared for. Often people with learning disabilities and / or autism have little say in which professionals provide their support. Not all participants spoke positively about the support they have received in the past. From the use of condescending language – “chip chop, pork chop” – to asking a resident repeatedly if she has washed her hair, the people LDT spoke to want to be treated as equals.
The majority of people surveyed by LDT said they like living with others; 81% want to live with friends, family, or housemates. One person LDT spoke with lives happily with two of her friends who are in a relationship with each other. She “calms me down if I get agitated and anything” and he’s “really nice”, she says.
Not everyone wanted to live with others; LDT found that 19 percent wished to live alone with support.
It is not just living in a supportive environment which impacts the quality of life of people with learning disabilities and / or autism. The importance of being able to develop their own interests and have access to them should not be underestimated. Many people spoke animatedly about going to sports clubs, and sports came out as the most popular activity of the sample. One person LDT spoke with expressed his frustration at being encouraged to do more sports than he wants to do, preferring to be gaming in his bedroom, a choice which should be respected and accommodated.
For others, a trip to town to do some shopping was their favourite place to go. Sadly, not everyone LDT spoke to felt they were able to partake in their favourite activities, often due to there being “no space left”.
Ultimately, it is factors like being surrounded by preferred people and having aspirations facilitated that elevates quality of life. It is not enough just to have basic needs met – people with learning disabilities and / or autism deserve better.
Change It Up together
Share your thoughts by commenting below or let us know who you want to change it up for on Twitter using #Iwanttochangeitup.
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Learning Disability Today interviewed 104 participants with a learning disability, an autism diagnosis or both in February and March 2020.
63 were classed as learning disabled; 42 were classed as autistic; one was both autistic and had a learning disability.
The diagnosis of face-to-face respondents was shared by the individual themselves, a service provider, an activity group official, or a parent.
Social media respondents were able to self-identify as autistic, learning disabled or both.
Three face-to-face focus group sessions involving individuals with severe, moderate and mild learning disabilities and two individuals with ASDs were facilitated, along with four solo interviews that were recorded on camera.
88 respondents participated digitally through social media polling. The responses of one organisation known to be passing as an individual was disqualified.
Twitter poll responses are anonymous, so there is no way of disqualifying Twitter contributors who may have already contributed on Facebook or face-to-face, or accounting for how many unique polls Twitter followers contributed to.
Individuals were asked 29 questions. Individuals were not obliged to answer every question.
Brighton Table Tennis Club, Grace Eyre and Speak Out Brighton supported the research in terms of allowing us to attend pre-arranged events, but no previews of research findings, write-ups, graphics or videos were shared by Learning Disability Today with any of these organisations. We thank these three organisations for allowing us to work independently throughout all stages.
One non-verbal individual was supported to participate through the use of a communication book and the support of a support worker.
Results from questions not published today are accessible here: www.learningdisabilitytoday.co.uk/change-it-up
Brighton Table Tennis Club, Grace Eyre and Speak Out Brighton supported the research in terms of allowing us to attend pre-arranged events, but no previews of research findings, write-ups, graphics or videos were shared by Learning Disability Today with any of these organisations. We thank these three organisations for allowing us to work independently throughout all stages.
One non-verbal individual was supported to participate through the use of a communication book and the support of a support worker.
Results from questions not published today have been published between April – June 2020 on www.learningdisabilitytoday.co.uk/change-it-up
