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Comedian Rosie Jones has made a name for herself on shows such as The Last Leg and Would I Lie To You?. Her unique style of self-depreciation has made her a household name in recent years and a particular favourite within the disabled community. Rosie has cerebral palsy and raises awareness of disability issues within her comedy.
She recently came under fire when it was revealed that she occasionally performs in venues with little to no accessibility meaning that many disabled fans are unable to attend shows.
With this comes the question of whether or not disabled people should be responsible for lack of access or whether this rightful anger has been misplaced. Should it instead be directed at the venues instead of the performer?
My personal feeling is that living with a disability is difficult enough and that Rosie shouldn’t be the one coming under fire here. As she pointed out on Twitter many venues don’t have access – something I have been talking and campaigning about for years – but that doesn’t make it her fault.
Whilst the criticism of the venue is valid, I can’t get behind tearing down a performer who breaks down barriers on the daily just by talking about disability on a national scale. Many people need to be educated about disability issues, not least non-disabled people, so is it really so bad that Rosie performs to a wider audience?
Of course, we should be able to enter any venue safely and without hassle but the reality is different.
By asking Rosie to perform in only accessible venues, it would mean that she isn’t able to spread the level of awareness we need to see. I understand wholeheartedly the disappointment and anger many feel but would the backlash be as newsworthy as it’s become if Rosie was non-disabled? My guess is not.
I’ve been to many events that haven’t catered to my needs but I don’t see that making the news. Mostly because the performer isn’t disabled and nobody cares that I’m there, but surely disabled people shouldn’t be responsible for change at every level? Putting the blame onto a disabled woman instead of the venues and promoters that handle the shows seems incredibly counterintuitive. And it by no means fixes the problem.
As a community that is consistently left out of discussions around inclusion, I think we sometimes have a tendency to pick at smaller problems rather than look at the bigger picture. If Rosie Jones didn’t perform in these venues her income would be considerably less – yet the venue would still be inaccessible. Has anyone even considered that Rosie herself may struggle to perform in these venues?
Why are disabled people being demanded to be perfect advocates when no one else bothers in the first place?
What we should be aiming for is a complete overhaul of entertainment accessibility so that both fans and performers can have their needs met. The real headline should read ‘Rosie Jones is made to perform in inaccessible venues due to lack of access’.
Responding to the criticism the comedian tweeted “I feel like I can show solidarity with the disability community by performing in these inaccessible venues and educating them on how to be more accessible. I also think everybody should be held accountable.”
She agrees with my previous sentiment as she continues: “Very few of my non-disabled colleagues are expected to only perform in accessible venues and then face negativity online when they do”.
Within the Twitter thread, she also clarified that her tour next year will be accessible for everyone and that this is the only time in which she has had a choice in where she can perform.
Despite the statement, Rosie also came under fire for her inaccessible Twitter account. She has been called out on many occasions for not using ALT text on images. This is something in her control and definitely something that needs addressing. One Twitter user said they’d asked for ALT text so many times they eventually gave up.
It seems a shame that Rosie and her team haven’t addressed this issue when it’s such a simple fix that will help the disabled community overall.
I think it’s fair to say that the comedian has a long way to go in terms of her social media presence but I do think we should be cutting disabled people slack and allowing for more learning and change to happen.
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The post Why the Rosie Jones Accessibility Backlash is Misplaced appeared first on The Unwritten.more
Earlier this week, an OpenDemocracy article revealed that thousands of people would be impacted by the cancellation of all hospital appointments and non-urgent surgeries that fell on the date of the Queen’s funeral.
At a time when hospital waiting lists are at an all-time high, with almost 6.8 million people waiting for appointments – 377,000 of those patients having waited for more than a year – such a drastic decision feels completely unjustifiable. One thing is for sure, though – those affected will mourn their cancelled surgeries, appointments and treatments far more than they will mourn the Queen.
The 19th of September, for me, was a glimmer of hope – a sense of light at the end of a long, dark tunnel. After two years of pushing for answers, I was finally going to have my first cystoscopy, and my second laparoscopy to explore my chronic bladder pain and ever-worsening endometriosis. At just twenty-one, I have been in chemical menopause for over a year due to multiple failures to properly manage my condition, and this surgery was the turning point I have been desperately waiting for.
At this point, I am just desperate for something – anything at all – that will give me answers. That will give me something to work from. An explanation. A break – even if it is just for a while – from the constant unknowing, the obsessing over every new symptom, the relentless cycle that is dealing with chronic illness. But now the funeral of one wealthy woman has taken that little glimmer away from not just me – but from thousands upon thousands of people who were likely placing all their hope and faith in one appointment.
This country is in a time of crisis, in more ways than just one. People are choosing between heating their homes and feeding their families. GP appointments are a rarity, as people across the UK struggle to access basic healthcare.
People cannot afford to live – we’re barely able to afford to survive. Yet somehow pouring what is already reported to be billions of pounds into one funeral is justifiable?
This all just feels like one big cruel joke.
Rescheduling these appointments is not a matter of just pushing things back a day or two. This disruption will add weeks of uncertainty and suffering to the already inhumane amount of time patients have endured at the hands of a broken NHS and a thoughtless Government. It will only further contribute to an ever-growing backlog of patients on waiting lists.
Regardless of your views on the monarchy – whether you love them or hate them – it is simply absurd and offensive to suggest this is an acceptable decision to make in the name of “respect”. Once again, the lives of the chronically ill and disabled have been totally disregarded to accommodate the wealthy, with absolutely no signs of remorse.
Where is the respect for our lives?
Sophie, age 30, is one of many patients who has been impacted by the disruption to hospital services. “I was referred to ob/gyn by my GP eight months ago, and I was scheduled to have a video consultation on Monday lunchtime. Being referred for an internal body issue, I can’t imagine there is much a specialist can do via video call so I was expecting that I would already have to wait another few months after that to actually be seen in person.”
“I’m frustrated that I can’t have my video consultation as it’s just delaying things even more, but I don’t really know if there is anyone I can take my frustrations out on. I also feel that because it was only a first consultation, there are others across the country with far more serious conditions that are being delayed and not getting what they need.”
“Me and my husband are starting to make plans for a family, and it makes me feel anxious that if we do find anything sinister, perhaps catching it earlier would have made a difference.”
June* has also been affected by the last-minute cancellations in accommodation of the Queen’s funeral. “Mine was a chemotherapy appointment for Stage 3 non-Hodgkin’s lymphoma.” She told me that she has been stuck on waiting lists since June this year.
“The change to my appointment means my treatment course will finish later, and will impact pre-paid travel plans.”
“This will also change care plans for my mum. It really is a miserable situation. My mum has her own appointment with oncology on Monday, but that is still going forward!”
What is most upsetting about these stories is that, as isolating as it may feel to the individuals suffering, these are not isolated cases. All patients who have had appointments or surgeries cancelled as a result of the Queen’s funeral will feel this pain, anxiety, and mourning regardless of where they are in their treatment journeys.
As now-King Charles steps forwards into his new role, the rest of us are thrust multiple steps backwards. We are left once again in the dark about our futures, our conditions, and our access to desperately needed healthcare.
My question is, where do we draw the line? This is not a matter of being pro or anti-monarchy, it is a matter of logic – and it is simply illogical to believe that such drastic cancellations and closures across the country are remotely respectable or appropriate.
This country has been in a state of mourning for a long time – not for the Queen or the increasingly controversial presence of the monarchy, but for the people constantly overlooked and left behind in its wake. What more will it take for this country to recognise just how little “respect” these establishments have for the lives that need it most?
When disabled and chronically ill folk can access acceptable standards of care, families can feed their children and people can heat their homes without experiencing all-consuming anxiety, then – and ONLY then – should we feel it acceptable to go to such lengthy measures to honour a funeral.
The post Cancelling Hospital Appointments for the Queen’s Funeral is Cruel to Disabled People appeared first on The Unwritten.more
ace funded northern stage (newcastle upon tyne) writes letter of apology for long-term toxic ableism. toxic ableism then continues.
now theyre telling those ov usmore
We don’t know about you, but it feels like the world is slowly imploding and with all the chaos going on, it can be quite tricky to keep up with it all. And news affecting the disabled community seems to fall between the cracks. So we decided to do something about it. Rather than rage to each other in WhatsApp, we (Rachel, your Editor-in-Chief and Cath, your Deputy Editor) decided to do something about it.
And so this column was born; “The State of This”, because well, have you seen the state of it all?
In this monthly(-ish) column, we’ll do a commentary on the state of news, politics, and society, and how it royally screws over the disabled community. And we’re inviting you along for the ride while we get a bit pissed at the state of, well, everything.
So sit, back, grab a cuppa, and enjoy our first rant, where we’re discussing the Tory leadership…
Basically, we’re screwed…
For those that have somehow missed the last decade’s onslaught of bile, hate, and bigotry towards disabled people since the Conservatives rose to power, we’ll try to give you a quick rundown of where we’re at.
The biggest red flag to date has to be their handling of the Pandemic. Rachel has already written about this for The Unwritten here, but if you want a quick summary, disabled people died of COVID-19 in extremely high numbers (6 in 10 or 59% in the UK between 24th January and 20th November 2020) and the government just didn’t care. We were dispensable, as long as non-disabled people could get a quick pint or “Eat Out to Help Out” – Thanks for that by the way Rishi.
And of course we can’t ignore how the tories have destroyed disabled people’s lives with the reform of the benefits system. Since they came to power over a decade ago they have consistently made it harder for disabled people who rely on benefits to live that many sadly haven’t survived.
The sheer scale of how many disabled people the tories have killed thanks to their rigourous, lacking empathy assessments may never truly be known, as the Department for Works and Pensions are simply refusing to release the reports. However, distressingly, what do know is that between 2013 and 2019 over 17,000 people died whilst waiting for decisions to be made.
Then in 2020, we learned that 5,000 disabled people died whilst waiting to be have underpaid benefits corrected, however the scandal has been linked to 50,000 deceased people. Death by Welfare exposed that the coalition government were responsible for the suicides of 590 disabled people between 2010 and 2013.
When asked what the DWP will do to ensure the safety of vulnerable and at risk claimants, Secretary Therese Coffee said “We do not have a statutory duty of safeguarding, though of course we do care about our claimants.” Sure you do babe, because nothing says caring like refusing to increase benefits in line with inflation and sanctioning disabled people who claim Universal Credit because you don’t think they contribute enough to society.
It is therefore with some trepidation, that after the catastrophe that was Boris Johnson’s tenure, we are now looking ahead to a new Prime Minister. Many people were cheering with joy singing “ding-dong the witch is dead” at the absolute mammoth implosion of Johnson’s downfall. Even some of his allies jumped ship, although to be fair they only jumped once the colossal amount of bailing they were all doing was clearly doomed to failure.
Despite the joy at the removal of Johnson, we now are looking ahead to a situation that for many, won’t fare any better. Both candidates, Liz Truss and Rishi Sunak haven’t got the best track record when it comes to showing they want to even meet the basic needs of disabled people (so any hopes for improving our lives verges on laughable).
Both have a track record of voting for reductions of welfare benefits – Sunak 20 times and Truss a whopping 45 times – and penalising disabled people who rely on them. Trawling through their voting records reveal their utter contempt for the NHS, to the stage where we’d almost expect privatisation any day now.
According to the BBC, Fifty disability charities have called on both Truss and Sunak to give more cost of living support to disabled people. While Sunak’s meagre response is a drop in the water based on what is actually required, at least he responded. The Truss campaign didn’t even respond to the letter.
Because the bar is now so low, we’re even having to acknowledge a response. That we actually exist. However it should be noted that both have consistently voted raising welfare benefits at least in line with inflation so there’s no (literally) putting their money where their mouths are.
So don’t think that a new Prime Minister is a new dawn of opportunity for disabled people. We’re still absolutely screwed. And to be honest, it doesn’t actually matter who wins, because we already know the loser. And yet again, it’s disabled people.
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The post The State Of This: How Much is the New PM Going to Screw Disabled People? appeared first on The Unwritten.more
J.K. Rowling, reality-estranged billionaire, author and all-around spiteful person, has published her latest persecution complex, “The Ink Black Heart.” The new doorstop, clocking in at a lean thousand pages, dares to ask the question: “Does being hateful to marginalized communities mean I have to face consequences?”
Excerpts circulating on social media show that the book contains references to spoonie Tumblr and ableism at large and expresses great disdain for yet another marginalized community. Rowling is infamous for her repeated attacks on trans people in general and figured, for her latest screed, “Who else can I insult this time? Surely, there has to be another minority I’m not remotely qualified to speak for that needs a good thrashing.”
Other iterations of the “book” will be a Braille edition made exclusively of thorns, an audio book that’s over thirty hours of outtakes from Lou Reed’s “Metal Machine Music” and a large print edition that alternates, every other word, between Comic Sans and Papyrus. All of these editions are available at bookstores near you, but only on the very top shelf.
Ex-fan Amelia Schroeder, whose pronouns are she/they, had this to say: “Like many others in my generation, I grew up with her books. But when she attacked the trans community, I was no longer wild about Harry. Ironically though, this book is great for those of us with POTS, given Rowling’s extremely high levels of saltiness.”
In her desperate pursuit of relevance, Rowling has made it clear that she’ll do and say anything controversial without a shred of concern for those who will be hurt by it.
The post Oh No, This Has-Been Author Found the Online Disability Community and Wrote a Cringey Book About It appeared first on The Squeaky Wheel.more
In “A Different Man,” Sebastian Stan has had hours of prosthetics and make-up applied for his role as a man with neurofibromatosis — a genetic condition that causes tumours to develop along the nerves.
One news website exclaimed, “Sebastian Stan is unrecognisable in horrifying prosthetics.”
The blame lies with Sebastian Stan for his choices. But our culture also has a broader problem of accountability and ableism.
Who on earth greenlit this film? Who chose to “transform” him? To take on someone else’s identity. To, essentially, cosplay disability.
The film follows Edward, an outcast seeking a new life and a fresh start. However, after he undergoes facial reconstructive surgery, he becomes fixated on a man playing him in a stage production of his previous life. It’s a cynical money-grabbing exercise – and we’re the sacrificial lambs to the slaughter.
It’s also a psychological thriller. What happens to the disabled person? We don’t know.
The film industry has again chosen to package and commercialise our trauma and perceived deficiencies, defects and shortcomings. Why else would they use an actual disabled person as a “before” image as a prop? Some warped, sickening notion of a makeover montage?
Imagine sitting in a chair for an extended period, watching your face slowly transform under layers and layers of make-up and prosthetics and not feeling a twinge of concern about the gravity of your choice. It’s prolonged and purposeful ableism masquerading as art.
After all, how is this helping anyone? What does it say about our culture that we’re still so unwilling to hold him to account?
He shouldn’t have accepted the role: the prosthetics, the hours of preparation, and his position as executive producer should have made him reconsider.
But can he or anyone around him claim the defence of privileged ignorance?
People with facial differences have had a long history of being misrepresented and dehumanised in film. From The Elephant Man to Bond villains, there’s a long line of non-disabled actors slipping on a costume to portray disabled people as evil.
Another important question is why didn’t the role gone to someone with neurofibromatosis or facial difference? This is another case, and history is littered with them, of disabled actors, artists and creatives being let down by an industry which doesn’t value them – doesn’t value the nuance, lived experience and skill they can bring to a role.
Allowing Stan to crip up to play a person with neurofibromatosis in A Different Man is a casting decision that’s undoubtedly steeped in ableism. Worse still, there has been a complete failure to acknowledge that Stan has even offended — from both his fans and many others online.
Instead, any notion of accountability is swiftly met with a torrent of ableist abuse largely aimed at disabled people by non-disabled people.
It’s also been repeatedly pointed out that Adam Pearson, who has neurofibromatosis, is in a prominent supporting role. Pearson has also been advising on the role and film, so its baffling how this was allowed to happen.
It’s unclear why Pearson couldn’t have been offered the central character and another disabled actor cast in his place. Pearson himself has defended the casting of Stan, which has meant his name has been thrown at those criticising the film.
Pearson should know better. We’re not tearing down a disabled person – or screwing him over. He knows what he’s doing. He knows the struggle – the blood, sweat and tears that have been shed for progress.
We’re told by non-disabled people that we should pity him, not contradict him. But why? He is a grown man—a disabled man who made a self-serving business decision and offered himself as a human shield.
He has packaged and commercialised his identity – and ours. How can he rationalise it?
He has condoned this project and a friendship with a non-disabled person, especially one with Sebastian Stan’s power. But it’s not a friendship when you can’t, or won’t, call out their wrong behavior — It’s a self-serving business arrangement. You cannot pass it off as a charitable act for the greater good when it leaves the work of generations of disabled people in tatters.
Ultimately, the question has to be to Pearson, what were you thinking?
It seems obvious that he has been used as a cynical human Get Out of Jail Free card against accusations of ableism. He, a disabled man, chose to appear in the film so why do you disabled people have a problem with it?
But as a justification, it’s irrelevant. A non-disabled actor should never play a disabled character.
Stan’s privilege is that he can add to our daily burdens and emerge unscathed. He might even be praised for his performance – his nobleness, sentiment, compassion, and humanity.
Is Stan even aware of his online fan cleansing? He has a responsibility to be. He is the figurehead, the reason for a concentrated hate campaign. So why hasn’t he intervened? “Don’t abuse people in my name” isn’t a radical statement or request.
Other disabled people have spoken privately about how they fear articulating their concerns publicly because they will face repercussions. They will be “piled on” by Stan’s fans willing to protect his reputation at all costs, unwilling to accept that he is fallible. The people who have spoken out on Twitter have experienced verbal abuse and acts of harassment.
Other celebrities have corrected ableism in their work in recent months – take for example the abuse Beyoncé and Lizzo received for including ableist lyrics in their songs. The difference here is they acknowledged their wrongdoing and made a change
And while many will argue that fixing a song is a quicker and easier process than recasting a film, the point again stands that the decision shouldn’t have been made in the first place.
But Stan, a male actor, isn’t held to the same standard.
Sebastian Stan isn’t the only one to blame for this, but it will be his name on the posters. These are the consequences of his actions. His name will be continuously typed out on Twitter and defended alongside words of vicious ableism.
He will be added to a list of actors who cosplayed and misrepresented disability in film and let others cope with the consequences.
Stan shouldn’t have accepted the role: but arguably, a film this ableist shouldn’t even be made.
This situation is more significant than Sebastian Stan. This isn’t a one-man issue, it’s an industry issue. Power over narratives like these comes from the writers’ room and structural change, such as writing workshops, diverse casting calls, and funding for educational spaces and it’s why we need disabled people in these rooms and taken seriously instead of used as a token to justify ableist choices.
But that structural change is only possible when disabled writers and actors alike are in the room – front and centre – for the right reasons. Let’s be clear: no one is involved in this project for the right reasons and it should never see the light of day.
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The post Why Sebastian Stan’s Ableist Movie ‘A Different Man’ Should Never See The Light of Day appeared first on The Unwritten.more
This month, the Society of Authors launched a new award. The Authors with Disabilities and Chronic Illnesses (ADCI) Prize offers a disabled or chronically ill author a top prize of £1000 for a novel — which must also include a disabled or chronically ill character — with two runners-up receiving £500 each.
Writing in The Bookseller, author and founder Penny Batchelor said:
“Whilst all authors other than those at the very top are affected by declining incomes, disabled and chronically ill people are amongst those who struggle the most.”
The new prize is meant to make a contribution toward correcting this problem, and many disabled writers celebrated the announcement of this new acknowledgement of our reality and our writing.
Recently, however, a particularly able-bodied furor has grown on Twitter, over the award’s entry criteria relying on self-ID.
Perhaps the most famous negative voice to have taken to social media to deride it, is actress Frances Barber, who tweeted to her 55,000 followers: “What on earth does this mean? No one ‘self identifies’ as disabled or chronically ill. They just are. Sadly so. Language matters.”.
As a disabled writer, I agree with Frances that language matters, but not in the way that she thinks.
Quite simply, self-ID is the only way to ensure that disabled and chronically ill writers won’t be discriminated against when trying to enter a literary prize. If that sounds counter-intuitive, then let me explain.
Self-ID has long been the preferred approach for the disability rights movement, for a number of reasons. The first, is that despite what many non-disabled people believe, there is no such thing as a disabled registry. As disabled people, we don’t ‘sign-up’ anywhere as disabled, so there is no official record of our disabilities.
How, then, should a disabled writer prove they are disabled?
Many suggestions online range from a statement by a doctor, to being in receipt of disability benefits. But these are discriminatory suggestions that over-burden disabled writers and would bar many from participation. This is because not all disabilities are visible, and access to healthcare, diagnosis, and benefits isn’t applied equally.
Numerous studies show that women receive diagnoses years later than men. BAME patients, and patients for whom English isn’t a first language, also struggle to access appropriate healthcare. And those who have complex illnesses but can’t afford specific tests not offered by the NHS, may very well remain undiagnosed, but nonetheless disabled.
Similarly, many of us are unable to access benefits, even with extensive statements from a doctor. In fact, a report by the UN found that the government’s treatment of disabled people was a violation of our human rights, and the DWP recently admitted that it wrongly refused disability benefits at a record rate.
This is something I know only too well. After being mostly housebound for nearly six years through disability, only in 2020 did I first start to receive PIP — and I had to take the DWP to court to get it. On top of this, although my doctors were happy to write supporting statements for me when asked, seven years on from the medical event(s) that disabled me, no doctor has ever said the words: “you’re disabled”.
Despite my now rather numerous ‘official’ diagnoses, many of my doctors have gone to great pains to tell me not to refer to myself as disabled, as to do so is ‘giving up’.
Because of this, like many other disabled or chronically ill people, the realisation that my health conditions were no longer a ‘blip’ in a healthy person’s life, but something permanent and ongoing, wasn’t something that was handed down to me by a doctor or a diagnosis.
It came upon me slowly, over many years of trudging through the convoluted medical system, hoping to find answers.
Yet, during the three-and-a-half years in which I was housebound, but had received no formal diagnosis, it would be difficult to argue that I wasn’t already disabled. This is a reality for thousands of other people, who are undeniably sick, undeniably disabled, but have yet to be formally diagnosed by a doctor.
Forcing disabled people to provide documentary medical evidence of a disability not only infringes on our privacy, but it also bars many of us from entry, and throws into question what qualifies as a disability.
Who decides which medical conditions make the cut? Is there an arbitrary level of suffering that must be attained before a writer can call themselves disabled?
Should writers have to submit private medical records to a panel of strangers, who will then decide — with no medical training of their own — whether or not we’re deserving?
The reality, is that this draconian approach would replicate the same situation which sees thousands of disabled people denied benefits by the DWP.
It is the perfect way to turn a prize intended to uplift disabled voices, into an obstacle course designed to reproduce the same discriminatory practices that bar us from healthcare and financial support.
The final argument from well-meaning but misinformed commenters online, is that self-ID would allow non-disabled people to claim they’re disabled, in order to access the prize. However, when there are prizes or submission callouts for LGBTQ+ writers, for instance, this same argument doesn’t apply – however we can’t ignore the fact that self-identifying has become so taboo because of those against trans rights.
Like disability, you can rarely tell if a person is a member of the LGBTQ+ community just by looking at them, yet we trust that cis-het people won’t apply for a prize that’s intended for queer writers. The alternative, would be demanding a full sexual or romantic history from self-identifying queer authors and artists, and it should be obvious why that isn’t a desirable state of affairs. [Editors note – though as a bi person our sexual histories are often demanded.]
In a similar way, disability is as impossible to prove on paper as queerness, since many disabled people are undiagnosed, don’t have access to healthcare, and are denied the benefits they’re entitled to.
While it’s possible that one or two non-disabled people may try to sneak their way onto prizes that weren’t designed for them, the alternative — requiring extensive medical or sexual histories from applicants — is far more damaging.
Ultimately, self-identifying is not synonymous with ‘faking’. If we accept self-ID as the standard for other identities, then it’s patently ridiculous for disability to somehow be exempt from the trust we give to others in the publishing world.
Disabled people deserve a space for our talents to be recognised, and self-ID is the only fair way to get there.
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The post Why Self-Identification is Vital for Disability Justice appeared first on The Unwritten.more
My ICU Summer: A Photo Essay
Content notes: medical trauma, hospitalization, blood, systemic ableism, death, anxiety
This is a semi-accurate account of what happened to me this summer based on my hazy memories, medical records, and photos. At the time I did not share much and will continue to be intentional about what I will and will not reveal. I’m doing this now so people can be informed of mymore