Facts About My Impairments You Might Not Have Known #1

There are lots of aspects of disability which I talk about openly, and others that I never mention. Many I just take for granted these days, but I thought it would be good for awareness to share some of them.

So I'm going to have an occasional series of 'Facts about my impairments you might not have known'.

#1 I need artificial saliva in order to be able to swallow.

The TUC, March for the Alternative and Language Discourses which Promote Exclusion.

Two blog posts were brought to my attention yesterday that really merit a post each, but I don't currently have the capacity to do that, so they will have to share a space.

Firstly, an open letter to Brendan Barber, the General Secretary of the TUC, from Disabled People Against Cuts.

This letter is appealing to the TUC to work with them to make the March for the Alternative on the 26th March, more accessible to disabled people. They point out that

At the latest count it was found that disabled people were facing fourteen separate attacks against our lives and living standards as a result of the Coalition government’s policies. What we are witnessing is our human rights, supposedly guaranteed under the United Nations Convention on the Rights of Disabled People, being violated by regressive and draconian cuts to benefit and care funding.

and ask that disabled people are as " fully included in this march and rally as our non-disabled peers would take for granted".

Disabled People Against Cuts have clearly explained the numerous barriers to disabled people's participation in this event, and have as yet failed to get a response from the TUC about their suggestions of ways to improve access.

Given how horrifically the cuts ahead are going to affect disabled people's lives, it seems that we should be at the forefront of planning such protests, not ignored and sidelined.

The second is a post from My Political Ramblings about Welfare Claimants and the Discourse of Threat, and articulates really well the process of scapegoating, rhetoric and stigmatisation involved in making the cuts to disability benefits acceptable to the public. This is a really insightful and useful post, and is well worth reading.

**Edited to add, as I posted this, Lisa posted simultaneously that the TUC have now released access information. Please check her post for the most up to date information.**

(Cross posted at Where's the Benefit?).

Open Letter to Proud Galleries

Dear Mr Proud,

I was dismayed to hear that today, your gallery refused entry to a woman who is a wheelchair user, on the basis that her wheelchair took up too much room. Your website boasts of 'some of the best press coverage in the country' and 'exciting, cutting edge and sometimes controversial' exhibitions, and states, rather ironically in the circumstances, that "Based upon a formula of exhibiting accessible shows around popular themes Proud Galleries instantly took the photography industry by storm".

How accessible is a show if a woman is not allowed to enter because of her use of a wheelchair?

As well as being deeply disrespectful and offensive, I am sure you are aware that this is also illegal under the Disability Discrimination Act. I see also that you have Mencap listed under your Sponsors, and I will be contacting them separately to ensure they are aware of this situation.

And

Dear Mencap,

Please find below an email I have just sent to Proud Galleries, who list you as a sponsor. I thought you would want to be aware of the situation.

**Edited to add. Since posting this message, @proudgalleries have posted the following tweet:

"Sorry for upset. We have 2 wheel chair access points, we open our doors to everyone. Capacity was reached, it was a 1 in 1 out policy to all."

Hate from the Government, Hate on the Street.

Today I went to an appointment, and afterwards, when I was almost home, a man who was coming from behind me shouted something. I turned to him and laughed and said, "that made me jump", and he yelled it again, but I couldn't work out what he said.

He crossed over the road and yelled the same thing for a third time, and I worked out that he was saying "fucking DLA stick". I said, "I don't know what you mean?" but as I was saying the words I realised that I did. He was implying that, as I walk with a crutch, I was faking a disability to receive benefits.

For the rest of the length of the street, he yelled 'fucking DLA stick' at me again and again. I felt very intimidated and frightened.

And I knew. I knew that it was caused, as well as by a nasty, nasty man, it was also caused by this:



and this:



and this:



and every other story by the government and the media portraying disabled people as lazy (see the photo in that final screenshot!) scroungers.

I do not need to justify my use of a mobility aid to a complete stranger in the street, never mind one who is flinging abuse at me. The thought that I would carry a big, awkward metal thing around with me at all times in order to claim benefits is just ridiculous. The realisation that this is what some people think, that's frightening.

If anything like this happens to you, remember that it is a disability hate crime. You can report it directly to the police, or through an intermediary such as Stop hate UK.

The war against benefit claimants is, sadly, proving more effective than ever.

(This was cross posted at Where's the Benefit? blog)

What's a Life Worth?

Someone pointed me to a site called 5 Quid for Life,

a new charity-in-the-making, set up in January 2011 to support mentally ill people who may be adversely affected by changes to the UK benefits system.

and it made me so, so sad.

Set up in response to Aliquant's post about her plans for suicide if she is refused ESA,

to encourage people to give, ideally to commit to regular giving of £5 per month, to enable us to offer a life-saving safety net beneath the benefits system.

It made me sad, and then it made me angry. Not the site itself - the site is lovely, and caring, and a beautiful response to someone's utter despair. Rather, it made me angry that this is necessary at all. That anyone in this country in the 21st century saw a need to get strangers to donate money so that people with mental health problems can support themselves rather than kill themselves.

How has this happened? That we are under such scrutiny, and in a state of such terror, and so disregarded by the government, as well as the opposing party, that millions of us are at risk of homelessness and destitution, as some kind of punishment for being ill.

Any idea that once our benefits are stopped, we will 'buck our ideas up' will be proven again and again to be, at best, misguided, and at worst, downright dangerous. Threats of suicide are worryingly frequent in comments on this blog alone. Those of us with mental health problems are thought to be the most at risk of failing the assessments, which are reported to ask questions which are much less relevant to people with mental health problems, as well as other invisible disabilities.

One thing is for sure, the medicals, the reassessments, the regular hatred in parts of the media, the misinformation from the government, are all working together to make us more stressed, more depressed, more anxious and more paranoid. Therefore further and further away from the elusive 'wellness' which would enable us to start thinking about paid work and leaving the benefits system.

I am disgusted, and ashamed, to be in a country where people are having to hold collections in order that people will be able to eat. People, specifically, who are frightened, sick and vulnerable.

(Cross posted at Where's the Benefit? blog)

Speech Kinda Recognition

To see whether resting my left hand is helpful, I am trying out the Speech Recognition Software which came with Windows 7, as one of my main problems with my left hand now is typing.

I'm getting the hang of it. It's quite slow and frustrating, but more usable than I thought. But this morning, for fun, I put the headset on the radio speakers. This is what it made of the end of the Today programme and the beginning of Saturday Live.

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Good Advice Matters

Someone drew my attention to a website called Good Advice Matters, which is a non-profit organisation dedicated to offering 'accurate and relevant information' on welfare rights.

We have many years experience behind us and specialize in disability and sickness benefits, appeals, benefits for foreign nationals, better off calculations, benefits for young people, benefits for carers etc.

Good Advice Matters supports the rights of individuals to claim the benefits that they are entitled to without experiencing judgmental attitudes, un-necessary delays and confusing and contradictory information. Good Advice Matters is frustrated with the lack of accurate information and advice currently being offered by the DWP. In short we feel that benefit claimants are being let down by the system.

Good Advice Matters is extremely critical of changes to the benefit system such as the introduction of employment and support allowance for claimants with limited capability for work and the planned cuts to benefits such as housing benefit. We have seen at first hand the devastating affect that a decision to stop benefit can have on an individual and we will actively campaign to ensure that claimants receive a fairer, more transparent and supportive service.

They invite people to contact them with any benefit query or question.

They have already answered one query about Is my Incapacity Benefit Safe? and under their DWP tag and benefit advice tag they have plenty more advice on benefits.

www.goodadvicematters.co.uk looks like it could be a really helpful resource for disabled people, regarding benefits and rights, especially as more, confusing and punitive changes come into law.

(Cross-posted at Where's the Benefit?blog).

Shhh!-In At Sheffield Libraries

Yesterday I read with dismay that the bundle of awesomeness that is Ian McMillan has been banned from a children's creative writing event for fear that he may make political comments.

He is a big fan of libraries, and has said “Libraries are a vital and irreplaceable part of a cultured and civilised society, and one of the few public places left where you don’t have to pay to get in.” Of course, he's quite right!

The story a few weeks ago of residents of Stony Stratford withdrawing every single book from their local library to fight its closure was thoroughly inspiring.

According to Library Workers For a Better Future,

In Sheffield it is being proposed that the present library budget of £8.5m should be cut by £2.5m by 2013/14, i.e. by £1.4m in 2011/12 and £550k in 2012/13 and 2013/14. There are no current plans to close libraries but cuts on this scale will inevitably have a major impact on the quality of the library service. As a campaigning organisation we are keen to work with the council wherever possible to highlight the good work that libraries do in our communities. This lack of cooperation on even such a simple thing as a children’s creative writing workshop leaves us with little option but to pursue other ideas...

The 'other ideas' they talk about are a 'Shhh!-in' at Sheffield Central Lending Library on the 5th February. That date is the national day of action for libraries, and at 11am at Sheffield Central Library, the following is proposed:

Shhh-In rules…

Finger to lips.

At 11am say ‘Shhhhh!’

Finish off with three cheers for the library!

Finally, borrow lots of books – lets empty those shelves. You’re allowed up to 15 out on your library card, so bring a big bag!

You can keep up to date with the campaign by following @lwfabf and the #shh4sheflib hashtag on twitter.

It's My Nerves!

I haven't written a personal blog post for aeons. But here we are.

I went this morning for an EMG and nerve conduction tests. I've had them before and it involves sending electrical impulses through you to see what your nerves are doing, then putting a needle into your muscle and sending electrical pulses through that as well. It pretty much is as unpleasant as it sounds, though the wire in the leg muscle wasn't as painful as it was last time.

The problem came when he tested my arms as well. This, I think, is supposed to be a way that they can compare the damaged nerves in my legs to nerves in my arms which are ok. But the nerves in my left arm are, it seems, not ok. He kept asking me questions about my left hand. Was I *sure* it wasn't numb? Was I *sure* it was ok. I eventually admitted that I have been having some trouble touch typing with it, and he did some sensation comparison things on both my hands and, sure enough, I have a loss of sensation in my left one. This was clearly showing up in the tests he was doing, which is why he was so insistent.

The thing that scares me is that the neurological problems started with my left foot and leg, then a few weeks later affected my right foot. Now it has affected my left hand, I fear my right hand will be next and then... who knows? I do know, from reading, that this does happen with neuropathy.

He didn't give me any results or analysis, he sends his results to the neurologist who will then go through them with me. But I'm more than a little depressed about potentially having hands as crap as my feet.

Later I went to see my GP to talk about the ongoing neuropathic pain from the site of my neurosurgery last February, and he has increased my gabapentin dose. I'm trying to be optimistic but it hasn't helped so far, and it has thoroughly foul side effects for a few weeks with each increase. I'm going from 1200mg a day to 1800mg a day.

And there's more, of course. There always is. But that will do for now.

I started, so I finished

After fixing all the linkage to the right, I decided it would be good to just prettify the whole thing. Welcome to my new blog design!

It's not perfect, and there are things that I would like to change but can't because it's a free template (like the twitter link in the top right hand corner, and the text colour), but I like the design, and it will do.

Now, Up To Date.

For a long time now, the links in my right side bar have been horribly out of date. They didn't represent the blogs I do read, they didn't represent the blogs I no longer read, and many no longer existed or had become password protected.

I used to use the right sidebar links as my way of keeping on top of which blogs I read, but now I read most blogs in google reader, and have been ignoring ---> for months and even years.

It got to the point where it was ridiculous, I wasn't linking to my favourite blogs and I was linking to lots of dead ones, so I set about the dreaded task of sorting it out.

So, for the last few days I have been going to each blog I linked to, and either adding it to google reader, or finding it was long gone, or finding it contained things I didn't want to read any more. So the blog list has been gradually shrinking - the more I did, the more I deleted.

And I have worked out a way to link to the blogs I like and read, without the sidebar getting so overwhelmed again, so now I have set up my blog list to be attached to my google reader account, but only the ten most recently updated blogs will show to the right.

I have also deleted a lot of the links that weren't blogs. The ones that remain are below the blog list. I should order them somehow, but I'll work that out in time. I have also changed my twitter feed, flickr feed and last.fm feed gadgets so they are more up to date, and look neater and fit in better, and added a 'most popular posts' thing right at the bottom of the page.

Sheffield Seed Swap

There will be a Sheffield Seed Swap on Sunday 20th February at The Old Sharrow School, S7 1DB

we invite you to take some of our saved seeds and share with us seeds that you have saved yourself. Its aso fine to come empty handed ! we would just ask for a donation for any seeds you would like to take...or perhaps there is something else you can swap?
All the seeds saved here at the seed swap are organic and local.

This means that these seeds will be more suited to local climatic
conditions and will be more suited to organic growing conditions.

Seeds are one of humanities greatest resources. We rely upon saving seeds for most of our food, and much of our clothes and our medicines. One seed can produce a plant that will produce many thousands of seeds, each with the potential to produce many more thousands...

seedysunday.org is a good resource for seedswaps nationwide.

There will also be information on local community food growing projects, and other local food events as well some plants, cups of tea, and cake! This event is free. We welcome donations to keep this event going into the future.

You can find more information at growsheffield.com.

Mozaz's Funeral

Mozaz's funeral will be held next Thursday, 3rd February.

You can see the full details here, but the very basics are:

"The service will be at Grenoside Crematorium in the North Chapel starting at 12pm and finishing at 1:15pm

The service will then be followed by a gathering of friends from 1:30pm onwards at Philadelphian Working Mens Club".

Euthanasia Kits. Joke or Tragic Truth?

What Do They Know? is a fascinating website. You can submit Freedom of Information requests through it, and view the requests submitted by others, as well as the responses from the various public sector organisations. So you can do a search for, say, work capability assessment and see all the requests and responses made through the site, or search for your local area, or hospital, or a government department.

But when someone sent me a link to this FOI request to the DWP about euthanasia options for those who are removed off DLA / ESA I assumed it was going to be a joke. It turned out, in fact, to be horribly, chillingly apt.

The request by Stuart Wyatt begins,

With your department aiming to remove the benefits from 25% of DLA
claimants, and deem 91% of ESA claimants as fit for work, please
could you inform me what provisions have been made for those
disabled and sick people to choose a quick and painless death in
preference to slow and painful death by starvation, neglect or
homelessness.

and goes on to ask whether ATOS will therefore be providing suicide kits.

The same man has made a video of telephone calls to ATOS asking for the same information.



It would be funny if it wasn't so damn true.

Back to the Freedomof Information request, the DWP have to reply by the 21st February, so do check for their response.

Mozaz all over the internet.

I posted yesterday about Mozaz dying. Since then various people have written about him, so I wanted to do a round-up of the things I have found.

Firstly, someone posted yesterday's post on Indymedia - not sure who did that but thank you. As we need to get the word out, it was a good move.

Other links I have found:

• Ian Bone: 'Project Sheffield' Mark 'Mozaz' Wallace has died
  
• Truth, Reason and Liberty: RIP Mark "Mozaz" Wallis
  
• I Intend to Escape..... and Come Back: Mark Wallis Of Sheffield - Mozaz Dies
  
• Sheffield Green Party: Mark Wallis aka Mozaz
  
• 28 Days Later: Dave Wallis aka Mark Wallis aka 0742 - RIP
  
• Sheffield Forum: Mark 'Mozaz' Wallis - 1/08/65 - 23/01/11
  
• What people are saying about Mozaz on twitter
  
• Sheffield Flickr Group: Mark 'Mozaz' Wallis

I will post here when I know anything about the funeral details.

Mozaz.

Mozaz, aka Mark Wallis, was angry, unpredictable, stubborn and inconsistent.

But he was also passionate. And way more sensitive than many people gave him credit for. He was supportive, when he liked you, though whether he liked you or not could change at a moment's notice. But when he was on your side, he would back you up every step of the way, whatever the kind of support you needed was. Emotional support, practical support, and advice. He offered, and he meant it.

Mozaz was a great photographer who, like me, didn't see any contradiction in finding beauty as much in abandoned, derelict buildings as in the rolling countryside. And he found much beauty in both. He adored Sheffield and was certainly one of its characters.

And Sheffield, despite itself, will miss him.

As an anarchist, and a troublemaker, and with strong feelings about almost everything, he was often to be found at demonstrations and protests. As a person he found solace in hugging trees, he wasn't ashamed to admit he cried.

The last time I saw him he was proud to have spent the past few hours in a police station. He felt proud that he was considered to be enough of a threat to the state to be worth arresting. Before being released without charge he had made sure to inform all of the coppers of their union rights, urging them to seek advice about whether they should be enforcing fascist government policy. He was exhausting to be with. Everything had the potential to make him rant, often in unexpected ways. But there was an anarchist rave hidden behind every possible situation which could arise, and he never failed to provide it. He was a prolific blogger and was @ur32daurt on twitter.

Mozaz was hard work, but if you looked beyond what was immediately visible he was sensitive, supportive, intense and warm-hearted.

He died in the early hours of this morning after a time in Intensive Care with pneumonia. Through the last few days, since becoming aware of his being ill, I kept hold of the fact that he was surely indestructible. But sadly this proved not to be the case, and he has left this city a little quieter, he has left the police force with a little less work to do, and he has left many people, myself included, reeling.

I'm going to miss you Mozaz, you mad bugger.

52 Weeks, 52 Letters Challenge

I love writing letters and cards, and I have phases of doing lots, then not doing any for ages.

The 52 Weeks, 52 Letters challenge for 2011 has inspired me. I aim to write a letter or card each week this year.

What a lovely challenge! There's nothing quite like receiving a hand-written, personal note from a friend through the door, and I hope I can bring 52 smiles to others throughout the year.

Don't Be On The Giving End

Oh dear, it doesn't matter how many times we talk about it, and my goodness we talk about it a lot, it happens again and again.

Last Christmas we were told to not be a rape victim, earlier this year we were told that it was because of what we wear, and that half of Londoners surveyed thought there were times that rape was the victim's fault, and these are just the tip of the iceberg.

So, in time for Christmas, Hambleton and Richmondshire Community Safety Partnership have launched a 'hard-hitting campaign', advising people to not be 'on the receiving end' of domestic violence during the festive season.

I am struggling to see their logic. Is it aimed at women who they believe were somehow planning to be abused, yet on seeing the poster they will see the error of their ways, and decide against it? How else can it be understood?

Raising awareness of domestic abuse is very important. The quote provided makes good points: “Christmas is meant to be a happy time for families but for many living in our districts it will be a time of fear and pain,” said Sarah Hill, Director of Independent Domestic Abuse Services.

“The pressure builds up as people spend more time together than normal - which can often be a flash point for abuse. But we are here and ready to help – to listen or to provide some shelter.”

But how does this equate to the victim blaming, completely missing-the-point poster.

If anyone is going to urge anyone to do anything, we need to urge abusers not to abuse. It is so screamingly obvious that it frustrates me immensely that we have to write about this again and again and again.

Nobody wants to be abused. A woman seeing a poster telling her not to 'be on the receiving end' does not stop her partner 'being on the giving end'. It may just make her feel even more powerless and vulnerable.

Provide helpline numbers, sure. Provide advice and support, absolutely. But point the advice in a way that does not make it her fault. In a way that does not put the onus on her to not be punched or kicked or raped.

Because believe me, she already does not want to be on the receiving end. She does not need a patronising poster campaign to tell her that.

If you are experiencing domestic abuse, please call the National Domestic Violence Helpline on 0808 2000 247, or find a service local to you through the Women's Aid website.

And remember, it is not your fault. Ever.

I wish we did not have to keep saying this, but as long as people keep putting out information like that, we will.

(Cross-posted at The F Word)

Disability Works, Does It?

Companies like A4e, who are paid by the government to get benefit claimants into work, are treated with at best suspicion, and at worst fear and loathing, by many disabled people, especially following TV programmes such as Benefit Busters.

The DWP currently have a shortlist for other companies who are bidding for contracts to carry out government compulsory back-to-work schemes, and worryingly one of the shortlisted companies is the dreaded ATOS, who carry out the ESA medicals, and G4S (formerly Group 4 Security).

However, apparently also on the shortlist, according to benefitsandwork.co.uk, is a consortium consisting of a group of 7 charities, who have called themselves Disability Works UK.

Disability Works UK is a collaboration of national third sector disability organisations including Leonard Cheshire, Mencap, Scope, Mind, Action for Blind People, United Response, Pure Innovations, Advance UK and Pluss.

They boast about their £654.4 million turnover, and cash surplus of £15.6 million, which makes me feel a little queasy. As someone who has donated to more than one of these charities in the past, I will certainly never do so again if that is going to be used in a bid for them to gain their place in what is one of the most oppressive parts of the government's new benefit regime.

For charities and voluntary sector organisations who have done some campaigning against the punitive measures put in place within the benefit system, to now want to play an active part in that system, is disturbing. For them to use money donated by people in good faith as part of that, sickening.

And where does it leave our chances of major disability charities campaigning on our behalf against punitive benefit reforms? If they are hoping to profit from the legislation, I cannot see how we can expect adequate support or representation from them.

If Mind, Scope, Mencap, Leonard Cheshire et al win these contracts, will these charities, who are seen by many as the voice of disabled people, be playing a part in benefit sanctions? Will they be working with ATOS as colleagues? Will we ever trust them again?

(cross posted at Where's the Benefit?)

DLA Consultation: The Internet Responds.

Yesterday, Where's the Benefit? posted Broken of Britain's response to the DLA reform consultation, and today I am going to try to read the government's consultation document itself.

Other disability blogs and websites have already done some great posts on this subject, and I wanted to draw attention to some of what is being said around the interwebz on the reform proposals.

Fighting Monsters writes From DLA to PIP - a consultation begins.

Arbitrary Constant writes DLA Reform Consultation: Great Expectations, Worst Apprehensions.

communitycare.co.uk write DLA claimants to miss out in benefits shake-up.

Disability Alliance write Government announces cuts to disabled people's support as "new test".

Left Foot Forward writes Supporting Disabled People Not Sustainable says Coalition.

Disabled People Against Cuts have a cartoon entitled Don't worry when we want your opinion we'll tell you what it is.

I don't know whether I'll be able to make my way through reading the consultation document myself without breaking things and / or having a complete meltdown, but if I do I will try to summarise it in a blog post when I have.

(cross-posted at Where's the Benefit?)