We’re now live with the Purple Advantage crowdfunding campaign! Any support that you can give us to help spread the word would be greatly appreciated. More information is here:
In other news, my PIP form arrived this morning. Reading it I felt lost, anxious and upset. I can’t face looking at it now (all 40 pages of it) as it just feels inaccessible. I have a PhD and am a Cambridge graduate. I just don’t even know where to begin on this one.
This is a personal view. Every time I see photos of places packed, it just makes me want to stay at home even more.
Coronavirus: Prof Chris Whitty warns public over gatherings in hot weather
I’m not sure whether to share this. I’m quite ‘out’ with my mental health. I’ve had depression and anxiety for a long time. Lately, things have been getting on top of me. Today, I’ve upped my meds. It’s ok to get extra help if you need it in these exceptional times.
It takes a lot to shock me about the PIP process. I’ve just had a message from someone attending an assessment to say that the person they were attending with was made to simulate wiping their bottom during an assessment.
To the disabled people who are reading this: I understand your worry. What I know though is that disabled people are strong. We are resilient. We are capable. We are problem solvers. Our tenacity and determination continues.
Whilst today is officially the end of shielding, it’s important to keep in mind that in practice it will continue for many. I expect that Fran and I will be continuing to self isolating for the remainder of the year at least. The need for support and solidarity remains.
I need your help. If you or anyone you know has a PIP story to tell, I’d like to hear it. As you may know I’ve been talking about PIP for a long time. I’m now working with
@Debbie_abrahams
to call for improvements. Visit for more details.
Please share.
At risk of stating the obvious, blue badge spaces are for blue badge holders only. They are not drop off spaces, waiting spaces, a taxi rank or a space to snog your partners face off (all witnessed this morning). They are for people who need them. Don’t be ‘that person’. Thanks.
I’ll be spending a bit of today talking about the importance of the Social Model of Disability. Amidst narratives of ‘vulnerability’ and the Coronavirus, it’s really important to keep challenging exclusion in all its forms. Equality is not an optional extra.
We need more disabled people in management and board positions. The experience and understanding they can bring in so many ways is invaluable. The talent *is* out there. Engage with disabled people and find out for yourself:)
This is a personal view. If you are feeling scared, confused or conflicted by the announcement of an easing of lockdown measures for ‘vulnerable’ people, I feel that too. I’m desperate to see my family but I just don’t feel it’s safe yet. Keeping safe is the most important thing.
It’s funny. Every time I watch the Paralympics coverage on Channel 4 I have to pinch myself a bit. The amount of time and exposure that Channel 4 give to the games is world leading. Here’s to more of the same!
@C4Paralympics
With my personal hat on, I have a simple message for you based on what I see: Disabled people are struggling. They are fighting to live their everyday lives. You might not be aware of it, but the struggle is there. Big societal changes are needed to address this.
Morning everyone:) just another day in this household. The one with 2 disabled taxpayers making a difference to public life and who have 6 degrees between them. Put that in your pipe and smoke it eugenics!
A personal view: I’ve read the full ‘Living with Covid’ 19 document. It is of no help to me whatsoever as a disabled person. It basically says get a vaccine and an antiviral and get on with it. Where is the wider support needed to address the additional inequalities?
So I promised you some news. The news is that I have been fortunate to secure a great secondment opportunity to the Sport England Disability Team, which I will start in February. I am really excited and hope to be able to make a difference there :)
Update: there is a hero in this story. Her name is Priscilla. She listened to me. Heard me and got me in a taxi, seeing how shattered I was. I’m now safely in a taxi and will be home in a couple of hours.
Had to have a tough conversation with my parents this morning. No delivery or click and collect slots for Asda or Tesco and couldn’t register for Sainsburys. My dad, who has a heart condition and is 70 now debating going out which he shouldn’t. Stop panic buying.
Morning. Today is the International Day for Persons with Disabilities. What’s my biggest ask? That you’ll do your utmost to be inclusive *every* day, not just this one.
#IDPWD2019
#IDPD
Finally home safe and sound. Expected journey time: 90mins. Actual journey time: 4hrs. I hope sharing this experience is helpful. It also explains why I don’t intend to get a train in a while. I’m not a Paralympian, but sometimes trying to negotiate everyday life is a big event!
Lots in my timeline about carers. Fran and I use 2 PAs (our name for carers). They are a fundamental part of our lives. They run our house so we can work and live independent lives. The work they do may be low skilled. It’s impact though is positively life changing.
Hello everyone. I’m collating a list today of disability related activities that are helping people to stay active at home. If you have any examples of this then please share them with me. Please also RT this. Thank you:)
Watching with curiosity today to see how the plans for ‘learning to live with’ Covid will be inclusive of disabled people. The only way I have kept myself Covid free so far is by living a very restricted life. I’d like my freedom too.
Stories like this are so damaging. Antidepressants were literally a life saver for me at one stage and are a vital tool in fighting the formidable foe that is depression. Irresponsible journalism like this serves to reinforce stigma around mental health. Shameful from the Mail.
20 weeks of self isolation. More importantly for Fran and I, it’s our 6th wedding anniversary today. Good news counts double at the moment so I am feeling especially thankful:) We have an (indoor!) picnic planned.
What really annoys me is the ‘assistance’ desk at King’s Cross sent me down this route. Said no assistance was available and I needed to walk to St Pancras myself. They did this knowing that there was no step free platform access at St Pancras. Turn up and go assistance = a myth!
I’m not really sure at this point how I should feel. I think it’s bad. I also know there are worse things. I just wish I had the words to convey the cumulative effect of things like this. It just eats away at confidence, self esteem and sense of autonomy.
It feels strange watching on from a personal perspective as the world approaches self isolation as a novel thing. I have not left the house in 2 weeks and that’s not unusual. Do any other disabled people relate?
A personal view: This headline feels deeply insensitive at a time when people are struggling to make ends meet, and evidence suggests increased use of food bank and people rationing food. To ‘help out’ we really need to tackle structural inequalities.
I’ve a theory that disabled people are slowly becoming ‘edited out’ and progressively excluded from public spaces by structural barriers. Education is a good example of this worrying trend: Special needs cash shortfall 'leaves thousands of pupils unplaced '
It’s my birthday today so I get a wish. Yesterday I met with someone and they said they couldn’t talk to other men because ‘men are rubbish at talking’. Talking isn’t easy, but it helps and it matters. My wish: Men. More supportive chats please. It’s good to talk:)
Some personal news: I’m delighted to share with you that I have been awarded an honorary doctorate from
@sheffielduni
in recognition of my career success to date and commitment to disability equality in sport.
I’m humbled to be awarded this prestigious honour, that I will
Morning. It might just be me but I think it’s really easy to feel a bit overwhelmed at the moment. At times like this, I just regroup and think ‘even if I achieve one positive thing, today has been a good one.’ Take care out there x
This is why I have cut down about 80% of my journeys. I am lucky in that I am able to drive. Public transport = an anxiety provoking route of least preference. When it goes wrong it goes very wrong.
My mum has just told me that she is now on Twitter and following me. If you notice a change in my tweets from this point, it is purely coincidental...:)
Picking up quite a bit of worry this morning. A lot of the disabled people I know have been expecting a tough winter to follow what has already been a very hard few months. We are resilient. We will support each other and we will get through this too.
Face masks: it’s important to keep in mind that not everyone can wear them, and as important as they are, they will cause communication barriers for some. I really hope that disabled people who don’t wear one for legitimate reasons aren’t unfairly stigmatised.
I also want you to think about something every time you watch the Paralympics: The disabled people at home, still contending with the pandemic. For each person you see on the coverage, there will be millions you will not. Keep them in mind as you view.
Doing some work on disability and representation. I think there is a battle going on to control narratives around disability at present: To project and spin that things are getting better, when the reality is that they are getting harder (which the poll also shows)
28 weeks of self isolation as of today. I often hear that disability hasn’t been talked about much during this pandemic and disabled people have not been seen or heard. To an extent this is true. To the extent that it is: We’re just trying to survive.
I understand many of you will be worried about the weeks ahead. That’s understandable. Fran and I have been self isolating since the end of February and we’re still here, and still managing to carry on defined what we can do, as opposed to what we cannot. This is doable.
A periodic reminder that the use of ‘the disabled’ is poor practice. We are a broad church. ‘Disabled People’ or ‘people with impairments’ is better. Best is to consider whether disability is relevant at all.
Particular thoughts with those who are shielding tonight and can’t form a ‘bubble’. Having watched the world emerge from lockdown, I can relate about how hard it can be to carry on isolating.
Home from a fantastic couple of days! We scrub up well, don’t we?:) Left go right: my sister, mum, dad and I. Then my niece Lucy and Fran on the front row :)
We’ve made it to 18 weeks of self isolation. My challenge today (I’m tweeting it so I’m accountable) is to drive to the end of the road and back. I’ve been putting this off for ages.
Morning! The saying in our house at the moment is that ‘every bit of good news is worth’ double. Today it is Fran’s birthday! I’ve managed to surprise her with a ‘self isolation hamper’ with lots of creative nice things in. I recommend making one:)
I’m now at the doctors to talk about my PIP form and thinking ‘just how much money does this fundamentally flawed system cost?’ - I suspect it’s actually cost more than DLA and caused no end of distress to literally millions of people. Time for a rethink on PIP?
Morning! Fran and I have made it to 3 months in self isolation as of today. We’re still here, still healthy and still have lots to be thankful for. One day at a time. Keep safe x
For the umpteenth time, can we also *please* stop about “vulnerable people”. What we are talking about is vulnerability to a virus. That does not define people and who they are. See the person.
Our neighbour sent us a message saying ‘open your window’ as they know we are socially distancing. This is what we found. I wanted to share with you too. Keep smiling, keep calm and keep being compassionate x
I woke up today with a headache, a bit of a temperature and a cough. It’s probably just a cold but I’m self isolating anyway as a sensible precaution. I am calm and following the official advice. It’s a time for cool heads and composure.
I'm heading to Cheshire today to see my parents for the first time since January. I'm trying not to over think this too much, but i'm aware how lucky I am that I get to make it and to see them. The saying "good things come to those who wait" has rarely felt more apt.
I was woken up today by the sound of Fran crying. The reason? Social worker wanted to know the rationale for needing support in maintaining a habitable home? I have now stepped in and raised a formal complaint about the nature, timing and conduct of this care review.
Morning! It’s strange reading the newspaper front pages about holidays abroad being back on. For me, the thought of even leaving the house feels huge. It’s a really conflicting time. I want to restore my independence but not at the expense of my health.
Wishing my super talented, kind, funny, and generally all round awesome wife
@Frannywhit
a very happy 8th wedding anniversary. I often say our house runs on sport. As if to demonstrate it, Fran is at a meeting tonight! :)
So. After 17 weeks it looks like our self isolation can end soon. If we’d like it to. Mixed emotions about this. Things do look to be improving but is it too soon? I’m aware it will be a long road back too. How is everyone else feeling?
I reviewed the assessment yesterday with someone close to me, who I trust. They were shocked at what they said was a prolonged, intrusive and aggressive cross examination where I was trying to be tripped up for 90mins. That was my PIP assessment in a nutshell
I’m a bit confused by all the ‘save Christmas’ chatter. We’ve already written it off. This year, it’s just another day for us. There are also many who don’t celebrate Christmas. Surely there are bigger issues to focus on?
Your periodic reminder that with the closing of the Olympics we’re only half way through a summer of action from Tokyo. The Paralympics are coming soon...
A personal view. Seriously considering naming July 19th
#ExclusionDay
. To me, that would better reflect the situation for many disabled people who will be marginalised by what is set to happen.
If you haven’t already seen
#takehislegs
yet on Channel 4, then make sure you do. It’s the best account of the difference sport makes that I’ve seen in a long time. Thank you
@adamhillscomedy
:)
Update: spoke to a second assistance person as they walked past. They came back. Were lovely. Getting me a glass of water (a human touch! I asked as v thirsty and no pride at this point) - if next train is cancelled I can get a taxi
I’m reading a lot of deep worry from disabled people right now. The most important thing to do, right here and now, is to keep calm and look after yourself. Anything else can wait for another day.
Holiday snaps. This is why we have been to Forest Holidays a few times now. The adaptations are some of the best we have found anywhere. Even a hoist into the hot tub. When we know something works, we come back:)
I haven’t seen my parents for a long time. I love their back garden and the flowers there in particular. My mum regularly takes photos of the garden to give me a sense of being there. I love this rose, so had to share it with you. Sometimes it’s important to stop and notice :)
A personal tweet. Discussing disability leadership and the importance of lived experience this morning. Given the increased acknowledgement of the value of lived experience…where are all the disabled leaders? What is being done to develop future disabled leaders…?
Tough day? That's ok..perfectly understandable. I've never known a period like this in my life. Nor have most of us thankfully. The good news is that out of struggles strengths emerge. I know I sound like a broken record but together, we have got this. Be kind x
Morning! Day 3 of self isolation and all is well. I’m basically sleeping whatever this is (probably a cold!) off. Still calm. We need to be calm. Composure will see us through, and let’s all help each other. I’m so grateful for all your kindness and will be paying it forward:)
On a personal note, many of the stories and comments I’ve had from people about the PIP process will stay with me for a long time. This one from Andrew is one of those. The profound fear and hardship this process has caused is one of the most damning reflections on it
Access to Work..doesn’t always work.
If we want to close the disability employment gap, then we need to get serious about supporting disabled people to use their talents.
Access to work has now rejected my reconsideration for a change in circumstance because I had… too much money left in my previous grant.
- Support Work was all spent on their online portal so it’s their calculations which are wrong
- Money left would’ve only covered 2/3 jobs.
If you read one thing today, make it this superb article.
“I hope that today, people from all walks of life will take a moment to consider how they can take an active role in building an inclusive society for everyone to live their best life.”
@KateStanforth
Hi Kate. If this is helpful I’m happy to spend some time talking things through with you. I have recently started offering people some coaching based on my own professional and lived experience of disability. Feel free to get in touch if so. Wishing you all the best.
Next Cambridge train is cancelled. What an absolute mess. I can’t wait for another hour. Asked to see station manager and/or a taxi to Liverpool street.
I don’t think I’ve ever seen my timeline like this. So full of fear and division and just bleak stuff. I can’t control a lot of it. I can’t stop global conflict. What I will do today is reach out to someone with an act of kindness. My own small way of changing the narrative.
If you do one thing today, take a look at
#TweetForDisabledPeople
. It’ll be an eye opener. If you have an impairment and feel able to do so, share your experiences. By talking about them, we’re building understanding and breaking down barriers
On a slightly lighter note, I have now started a swear jar. Every time I hear someone use the word 'inspirational' in relation to disability this month I am going to add to said jar. My point? We need to be more diverse (and selective!) and have less inspiration porn please :)
Measures to reduce plastic waste have to be a good thing. The role of straws for some disabled people however, should be kept in mind. They are a vital tool, with suitable (ie hygienic and practical) alternatives few and far between. Without them, drinking is impossible for some
There’s a particular feeling when you travel anywhere as a disabled person I think. The whole ‘please please please let everything work and be accessible (because I have to rely on other peoples assessments of this!) adds a whole extra layer of uncertainty to any journey
Here is the BBC news story on my train journey on Sunday. I hope that it helps to add weight to calls for better accessibility. It was also great to recognise Priscilla too
Morning everyone:) Fran and I have made it to 9 weeks since we started self isolating. The reality is that we probably have much longer to go. There’s loads to be thankful for though. Here’s to staying the course and keeping safe.
Unless I’ve missed something..I’ve still not heard anything in the parliamentary discussions on the impact of the Brexit proposals for disabled people. I’ll keep listening...
Its amazing how far a simple 'thank you' can go and how much it can mean. I'm really conscious that people are working under testing circumstances at the moment, so I am making an effort to say thanks. If you see good work, praise it! You just might make someone's day :)
My Dad just reminded me that 8 years ago today, we were in the Olympic Stadium together witnessing Super Saturday. That evening will last forever in the memory (never gets old!) I’m so lucky and proud to be able to work in sport and harness its power on a daily basis:) is
So right now, here is where I would love to be. In my parents back garden, admiring their new pond. I have been tempted to drive the 160 miles to see them. I have resisted. I’m sharing this picture with you all instead:)