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Blog: “For me to be more active, change is needed”

Our latest Annual Disability and Activity Survey revealed many disabled people feel forgotten as we recover from the COVID-19 pandemic. We hear from one of our research participants, Paul, about his experiences and thoughts on what needs to change.

Paul smiling to camera

Now in its third year, our Annual Disability and Activity Survey highlights the worrying effects on the nation’s disabled population and the need for urgent attention to tackle growing inequalities. While last year’s survey highlighted the impact of the pandemic on disabled people, this year’s exposes the challenges and opportunities that lie ahead as we recover.

More than 1,800 disabled and non-disabled respondents aged 16+ took part in our survey from October to December 2021. Of those respondents, 20 disabled survey participants also took part in a series of online focus groups. Paul is one of those respondents. Here is his story.

Paul’s story

I’m 48 and I live in Sheffield.

I have Multiple Sclerosis (MS). This affects people in similar but different ways and to different extents. For me, my MS affects my left side with weakness, stiffness and pain. My first symptoms were Optic Neuritis, which over a year affected both eyes, resulting in reduced vision that cannot be corrected with glasses.

At times, I also feel overwhelmed and depressed with a reduced cognitive capacity, all of which are very common with MS. I tire very easily needing rest on most days. I can infrequently push myself through a day, but the following day or days I will be in bed sleeping and resting.

I used to cycle all year round for 12 miles every day to get to work and back. I also went to the gym three to five days a week doing both cardio and strength exercises.

I don’t really do exercise at all anymore. As I can no longer drive, I probably walk a fair bit. But I do not ‘go on walks’ just to get to places or to get the bus.

I am sure if I could find the spare energy to do the right exercise, I would benefit hugely. It would clear my mind, and help with weight control, and pain. It would make me more supple and be more physically prepared for any future episodes of my MS occurring.

Before the pandemic, I didn’t do any exercise. However, during the most restrictive times, I did take the occasional walk around my neighbourhood, but nothing more.

For me to be more active, and other disabled people and people with long-term health conditions, change is needed. It starts at both a strategic and local level. My needs and other disabled people’s needs must be thought about, planned for and made accessible.

Real changes to services, both public and private, need to meet the individual’s needs. This links to what fairness means to me, and that is that I have the same ability to access services as anyone else can.

Hear more of Paul’s story on our Annual Disability and Activity Survey YouTube playlist.

Visit our Annual Survey page to read the full report and recommendations in detail.

Follow the conversation on Twitter using the hashtag #ActivityAllianceSurvey.