As someone who has now lost three good friends to Duchenne Muscular Dystrophy, I want to flag this bbc story up. A potential new cure//treatment has been found. Of course, as ever, the researchers are staying pretty cautious  about it for now, but from what I read the results look promising.  I’ve seen first hand what DMD can do to boys and their families; it is one of the only disabilities I think we should find a cure for. It’s just sad  that this came too late for my friends.

On Monday at Chester train  station, as we waited for our train home, Lyn and I saw a guy with fairly severe cp go and talk to the station staff at the gates three or four times. He was using a powerchair and a lightwriter, and he had a high-vis jacket on. At first I thought nothing of it and ignored him, but the way he kept returning drew my attention. I started to wonder whether he  was okay and whether we could do anything to help him, so I asked Lyn about it. She told me that I should mind my  own business; for all  we knew, the fellow could just be one of the station staff doing his job. She was right, of course. After all, why should we have interfered just because we had  the same disability? Yet I can’t help thinking that if the guy was having difficulties communicating with the station staff, wouldn’t it have been better for us to help a fellow crip out?

At the wedding on Saturday, I got chatting to Charlie’s new brother-in-law, who recommended that I checked out a documentary about Donald Trump on Netflix. I watched the first  two episodes of it earlier  today, and it really is an eye opener about this wretched little man. I didn’t  know about Trump’s history – I took his word that he was a businessman. This program, however, paints a portrait of a complete failure of a human being, who is only where he  is through greed, arrogance and the manipulation of others. The guy is a complete tosser, whose warped ego  is utterly sickening. As I’ve said before: the longer America calls this embarrassment to humanity  it’s president, the more ridiculous it seems.  How can any self respecting nation have such a vile wretch as it’s leader?

Lyn and I got back from Chester late last night. It had been a long day at the end of an  incredible weekend. Charlotte’s wedding proved to be amazing, with tonnes of music, singing and dancing – as you would expect from her. It was held in the back garden of a large house just up the road from her old family home. We swung by there the day before, upon getting to chester, just to say hi; I swear the house I once christened The Burrow hasn’t changed a bit.

The next day we arrived bright and early to the wedding venue, with setting up in full swing and guests starting to gather. It turned out to be quite a glorious afternoon: the ceremony itself was magnificent, and in fact  brought a tear to my eye. C looked amazing in her big white dress. She and Alex wrote their own vows, which were quite stirring and all about love and mutual support.

After the ceremony the music began, with DJs, choirs and bands. I managed to get a dance with the bride  – I thin C was happy to see us there. The highlight for me, though, was an awesome little show performed by C’s singing group, The Harmonettes, all about how she and Alex fell in love.  It was so well done it quite made my jaw drop. The party lasted late into the evening, past midnight, by which time I was completely knackered.

I must say, though, yesterday didn’t prove such a  cool day; in fact it was pretty awful. There were works at Euston I’d been told about a few weeks ago, so we had decided to have an extra day in Chester. Unfortunately  by then our hotel room had been booked by other people, so I’d  had no  choice but to book a room at another hotel. Unfortunately, rolling up to the second hotel yesterday we discovered it wasn’t wheelchair accessible, even though it said it was on the website. We looked for other hotel rooms with no luck, so we decided to try to get home.

The  journey  proved  a total nightmare: we had to change trains about four or five times, including at an unattended little station in the middle of nowhere with lifts of pure malevolent evil. The trip took about six hours, and in all we didn’t get home until about twelve or thirteen hours after leaving our first hotel. It really was a nightmare, and I’ve never been so relieved to get into bed, although we did have some incredible pizza up in Marylebone on the way.

In all, then, it was an  incredible weekend at the end of an amazing two weeks. I don’t think I’ll ever forget this past fortnight.

I’m writing this on a train heading to Chester. While it has already been quite a week, this weekend promises to be truly special. My old university friend charlotte is getting married, and has invited me and Lyn to the wedding. Those mad cap undergrad days at uni now seem a lifetime ago, but C remains one of my dearest friends. Part of me cannot believe she is getting married, but to have a chance to witness this most special of days, after she helped me build so , many incredible memories, means more than I can say.

First of all I better reassure everyone that I’m still alive. Our trip to Poland was a great success, but soon after posting the previous entry my Ipad screen packed in so I couldn’t get online.  Dominik kindly lent me his Ipad to use as a communication aid, but nonetheless it was quite a setback. That aside, our  trip was awesome: the festival at Sokolowsko seems to be flourishing, and there was so much cool stuff on this year. I took my powerchair this time, the first time I took it abroad, and it was wonderful to  be able to move where I wanted. Lyn did not perform, but we both enjoyed being there as audience members. It really is a fascinating little place, and our PAs John and Dominik did an outstanding job keeping us both ok. I think we’re all looking forward to going back next year.

Today finds us in Wroclaw again, back for the same magnificent Polish festival Lyn and I came to last year. Truth be told, there isn’t much I can write about it just yet: yesterday was a long, quite gruelling day, and we are only just getting up. Nonetheless expect plenty of updates from here once everything is sorted and the party has properly started.

This was doing the rounds on Facebook, but I think I’ll post it here too because it lays it out so succinctly

I think anyone interested in Star Trek and  the future of the franchise  should give this a watch, although it doesn’t really make comfortable viewing. It explains some of the background of the problems  Trek faces. While  Patrick Stewart may be  returning to the role of Picard,   the video points out that the Picard we are set to get will be very different to the one we grew up with. The franchise has been split into many prime and secondary timelines, and it has lost the support of many fans because of it. As the video points out, these splits are because the franchise is being fought over by two separate studios, CBS and Paramount. Trek as a whole is thus in quite a mess, torn between different studios, timelines and styles. I had thought the different mise en scene of the new films  was an artistic choice, but it is, in fact, a  result of the franchise being fought over by two different studios: they had to look different for legal reasons. The same goes for Trek’s entire  timeline being rewritten. According to the video, Picard will be flung into this mess of competing narratives in order to bring fans back,  but having  watched it, I can’t help thinking that to use Picard in this way would just destroy a once great character. Trek has lost it’s way, and rather than see it dissolve into a  incoherent mess of competing timelines where the idea of  what is canonic becomes nonsensical, I’d rather let it fade into cultural history.

There are certain people in british public life who should not be there. Who, instead of appearing on telly every now and then or having newspaper articles written about  them, deserve to just be ignored as the utter irrelevancies they are. I just came across this Beeb article: Christine Hamilton has been removed as a charity ambassador  for Muscular Dystrophy UK after comparing burkas to the hoods of the Ku Klux Klan. As someone who has lost several friends to MD, reading that made  my blood boil. I don’t  want that xenophobic whore, that utter waste of human life, anywhere near that  charity. The bitch presumably thinks she can jump on the trump/bojo bandwagon and attract a bit of media attention and political clout for herself   and her husband. It’s as if they want to seem like countercultural,  independent thinkers by coming out with shit like this, when  in fact she is insulting and scapegoating an already oppressed minority in order  to score points with the most abhorrent, contemptible members of our society. She says she is being a  ‘British Battleaxe’,  but fascists like her have no place in  our cultural life:  xenophobia is xenophobia, and ignorant, arrogant bitches who contribute nothing to society should just be ignored as the embarrassments to human civilisation they are.

Today, along with a cover letter, I posted a copy of my MA thesis to Sir Patrick Stewart. I had always regretted not giving him a copy when I met him in 2014, but until now it seemed pretty pointless: why would he want to read about why I loved the Ahab scene in First Contact? Recently, though, I saw an interview where Sir Patrick said that one of the reasons for his choice to go back to Star Trek was that he had had so many people tell  him about the way they had drawn inspiration and strength from  Picard. Thinking about it in bed last night, I decided it was time I added to that: I wanted to let Mr. Stewart know that his work had affected me too. This morning, then, I bought an  envelope and wrote a short cover letter, and posted a copy of my thesis to  Mr. Stewart’s london agent. I hope with all my heart that he  reads it. It seems star Trek means  a great deal to many people, and I wanted to show the great man why it means so much to me too.

Our PA mitch is a uni student who often gets on with his academic work when Lyn and I don’t need his help. He has recently been doing some 3d graphic work, showing us what he  has been up to on hiss laptop. This morning, I was rather impressed with the spooky-looking he was creating, which he could rotate and manipulate in quite a fun way. I asked him which package he was using,  and he said it was called Blender. I  asked him what it cost. I didn’t expect  it to be cheap  (such software seldom is) but to my surprise, mitch told me it was free to download. I instantly decided to have a go: I googled it and, ignoring thee links too food mixing machines, I downloaded it.

I have spent much of the day since then trying to get to grips with it. To be honest it is  far from straightforward, but as Mitchel promised there are plenty of tutorials on youtube to watch. I have found it great fun, and can already see great potential for my film work. Alongside photoshop, I now have access to some great graphics packages  which I can use to generate all  kinds of images. Until now my problem has been that I cannot physically use cameras, but if I learn how to animate, who knows what weird and wonderful moving images I’ll be able to create.

A while ago on my blog I wrote that I was considering taking up psychology again. When I studied  it for my A-Levels, I didn’t take to it very well as I couldn’t get my head round the various different approaches.  But now, as a writer and film-maker with an interest in disability, it’s becoming clear to me how vital a knowledge of that area is. I’m gradually getting the picture that physical disability is only half the story (if that). While I could continue to try to tell the  world about what life is like for people with mobility, dexterity and communication impairments, there are many other forms of disability I know very little about: conditions like depression or schizophrenia which arguably get even less press than Cerebral Palsy, and are even less understood.

I know as  much about such conditions as the next man, but if I want to grow as a writer and film-maker with an interest in disability culture and politics, that’s the area I now need to engage with, especially given people with such conditions seem to  be becoming increasingly salient  in the disability community.

I just need to  commend BBC London news for the series they  are running on  public transport for people with disabilities. All this week on the local news, reports have aired about the trouble people with various disabilities face getting around town. I was out yesterday so I’ve  only seen a couple, but I think the Beeb is to be applauded for drawing the general public’s attention to this issue. Yes, public transport for  people with disabilities is much better than it was, say,  twenty years ago, but it still has a fair way to go, and news items like this help that progress.

I hear Facebook and Youtube have banned far right nutcase Alex Jones from their platforms. Truth be told, I don’t  know what to make of it. Of course, it’s pretty clear that Jones has something wrong with him: watch any of his videos and you see a clearly unstable man becoming more and more agitated in his attempt to spread baseless conspiracy  theories. His act might almost be funny if what he was  saying wasn’t so fucked up. Yet for these web platforms to ban such reactionaries completely, as if they have judged that such views have no place in modern society, risks straying into some very dangerous territory.

The western world seems to be in a very dangerous place right now. Nazi thugs attacked a left-wing bookstore in Bloomsbury on Saturday, in an episode reminiscent of fascist Germany. The morons thought they got their way two years ago, but  now reality is setting in and the utter stupidity of both Trump and Brexit is becoming painfully clear, they are becoming angry. They are like children who can’t get their own way, denied the toys they thought they were promised; or like drunken football supporters who thought their team won, but is having that victory questioned. It’s now pretty clear that sooner or later, Trump will be impeached and Brexit will be cancelled – good sense always wins the day eventually. My only worry is, how the right-wing thugs will react.

It’s official! Sir Patrick Stewart will  play Captain Jean-Luc Picard again. He announced it yesterday at a Star Trek convention in Las Vagas, and I got wind of it when my bro Luke sent me this video clip  of it. (The Beeb  is also reporting it now,  so it must be official!) In the clip, Stewart states that, in the planned new series, both he and Picard will be twenty years older  than  he was in Nemesis. That came out in 2002, so does that mean that the new series will air in 2022?

I think this Left Foot Forward is certainly worth a read. It gives us a rough idea of what a dangerous place the UK is in. The Brexit referendum has opened the door to a very dark place indeed, with all kinds of far right nutcases thinking it legitimises their moronic views. Scumbags like Steve Bannon now think they have  a platform here, and if we aren’t careful we could end up being lead somewhere truly abhorrent as a society.

Earlier I came across a video on Facebook of a young woman weeping into her mobile phone camera. She was sat on a chair in a train carriage, a large mobility scooter behind her, and she was claiming that the train authorities were kicking her off the train because of it. The woman was clearly extremely upset, telling the guard – and her camera – that she was having a panic attack. It was obviously a very uncomfortable situation for her, but I must say something did not feel quite right about it. The analyst in me kicked in, and I got the impression we were not being told the whole story: train guards do not throw people off trains just because they have a scooter or wheelchair. I take my powerchair on trains quite regularly these days, and I have never had a problem like this.

From the way the woman was describing it, though, it was just a problem of her having a scooter. I got the sense that that was how she wanted it to appear – a case of clear-cut disability discrimination. She kept emphasising her disabilities, and the fact that she had recently had surgery. The top part of a crutch was clearly in shot,  as if on purpose. Something was amiss here.

Naturally I tried to look on google for more detail. I found this short ITV article about it, and not much else. It says the woman has autism and Ehlers-Danlos syndromes, a condition which effects the skin and may loosen the joints. I could not find her name, or any other firm background detail. It felt to me like someone trying to claim they were being discriminated against in an attempt to claim victimhood, as if there was some other, hidden, side to this story. Given the woman was sat in an ordinary chair she was clearly ambulant; anyone with a significant mobility impairment would have a powerchair. It felt as if she was deliberately trying to play the cripple card, and that there could be some other, hidden, reason why she was in trouble. If you used a crutch, wouldn’t you lie it down somewhere? The analyst in me told me that a  story was trying to be told here.

I could be wrong, of course. It was only a short clip, and googling threw up very little further details. And the fact remains people with disabilities are discriminated against like this with alarming regularity. Yet the way she was videoing it, emphasising the fact she was disabled, seemed to me like she wanted it to appear like she was being discriminated against, and there were things we weren’t being told. It could have been  because she wasn’t actually in her scooter, but  was sat on a chair; in which case the train authorities would have been in the right – she should have bought an ordinary ticket, and was using a seat another passenger might need. Forgive me, but sometimes I think that more and more people with minor impairments tend to take advantage of disability discrimination legislation to get their own way, without ever having felt the full force of the oppression ‘we’ have faced…or am I just being bitter and cynical? Either way, she just seemed to be totally overreacting, making the situation seem like an overt attack on her rights when it may not have been. Mind you, that overreaction may be an aspect of her autism.

Today I got the answer to a question I have been wondering about for ages. My bro Luke  sent over my full weblog archive  in a single  document yesterday. Since my old website went down I had been fretting about all my old entries. Fifteen years’ work is fifteen  years’ work, and there were a lot of cool memories in that archive. I opened the  document earlier today, and, out of pure curiosity, did a wordcount: I was amazed to find out that  I  had written 932,898 words on that blog, and the document was 1360 pages long. I think that is rather impressive, and worth noting here at least.

I try my best to convey my thoughts and feelings on here, and I’m proud to have kept my blog  up  this long. Most of my old entries may not be online at  the moment,  but at least I know they are safe. That alone is enough to keep me blogging.

I think I need to flag up  this interview with Madeline Albright in the economist, about her new book, In it, Albright warns that fascism, or a new form of it, is once more creeping into world politics: the same forces that lead to the rise of Hitler, Mussolini and Franco in the thirties  can be seen now. “Today, we will be lost if we abandon faith in the institutions and values that separate democracies, however imperfect, from tyranny. History is replete with bullies who seemed formidable for a time only to crash by attempting too much or by underestimating the quiet courage of honourable women and men. Scanning the globe at this moment, I see abundant cause for worry, none for despair.” Populists who scapegoat minorities in order  to gain power are gaining dominance once more. Albright is right: we are now  in a very precarious position.

We may laugh at things  like this, but Brexit is becoming a serious, serious worry. The country is slowly waking up to reality, and I’m now fairly confident that, sooner or later, it will be stopped.