Martin’s post #DAYtoDAY challenge blog

Martyn Weller, chair of Disability Action Yorkshire, tackled a  24 hour journey on a mobility scooter on June 30 and July 1 to highlight the everyday challenges facing people with disabilities.

He travelled the 125 miles from Disability Action Yorkshire’s (DAY) Harrogate headquarters to the charity’s new, specially adapted holiday lodge in Kenwick Park Estate, Louth, Lincolnshire.  He raised £700 that will go towards the £50,000 cost of adapting the lodge to meet the needs of disabled people.

125 miles on a mobility scooter in just 15 hours

Well I did it  – 125 miles in under 24hours by mobility scooter!  In fact it took just 15 hours, largely due to Bessie not missing a beat, only 3 battery changes, and the superb backup from the Mobility Partnership, who followed a few yards behind the whole way – not to mention our own special branch of the Harley owners’ club.

We made it to Hull on the first day, and after an enjoyable overnight stop, we made good time the following day, in spite of a slight detour around a few housing estates in Barton on Humber, we got to Louth at the appointed 3pm. Me lost? Never had I just wanted to study a few bedding plant displays.

The first day was marred a bit by the awful weather which hit Saturday afternoon. A three hour stretch in open countryside with the driving rain lashing across the road as our hero bravely battled on defying all nature could throw at him. Well ok it wasn’t quite that bad but you know what it is like when you get wet and it’s running down the back of your neck and there is nothing you can do.

There were a few highlights to the trip, mainly milestones we could tick off. The first glimpse of the Humber Bridge, and the realisation that this was achievable.  We were still two hours from the bridge but well ahead of schedule.  Next day, of course,  actually crossing the bridge itself – a great but rather breezy experience; next passing the welcome to Lincolnshire sign; similarly the welcome to Louth sign and naturally arriving at the holiday home, to be greeted by the thronging crowd and a well deserved (well I think so anyway) glass of wine. Actually the word crowd doesn’t do justice to what must have been more than 10 people.

The other outstanding part of the trip was the reaction of so many people along the way who despite being held up still honked their support and waved. Only two showed their disapproval with various gestures and a few words mum told me to never use. I can only think it was a reaction to not knowing who their fathers were.  At least the curious spectator who asked what it was all about and then donated a fiver restored my faith.

So what was the trip like? Well as you trundle through the countryside you do notice things you take for granted when whizzing along in the car, the stunning beauty of the countryside we live in, the bird song, the numerous odours, the well kept villages each garden a credit to its owner, people stopping to chat, a dog bounding up to the gate anxious to see the world go by, the poor condition of the roads and the sheer amount of road kill. There were a few heart stopping moments on some roundabouts and the bits of dual carriageway I was forced to use, but overall I am sure I had the easy bit.

Thank you everyone who has supported this mad cap idea, I suppose you are all thinking what next? Well watch this space………..

I’m so impressd by Martin’s remarkable achievement- and I’ grateful that thanks to his determination, the holiday cottage is one step closer to providing affordable holiday accommodation for disabled people and their families. This is what the holiday cottage looks like:

The cottage in the woods

The bedroom


Sheffield #Access #Fail by @Northernrailorg

Being a disabled traveller

I don’t often blog about the minutae of attempting to be a working person who uses various mobility aids in order to participate in society, but the response to a number of Tweets I sent out yesterday when I found myself in a labarynthine mess stuck between policy and prejudice that I regularly encounter in the public sphere. So here’s a snapshot of what it’s like for me to attend a meeting.

Going to visit Patient Opinion in Sheffield

I had arranged to go to the @PatientOpinion offices to catch up. I’m a big PO supporter, but haven’t previously been to the office. It’s only 35 miles from my door, so how hard can it be to go there for a meeting?

Problems encountered every time I travel

Firstly, I can’t lift the pieces of my scooter into the boot of my car. this means that to all intents and purposes, it’s useless to me. I have to go everywhere in taxis and on trains. I could use some buses, but the attitude of various drivers and the physical difficulty of getting into the approved space means that this option isn’t used at the start of a long day because it’s so exhausting.

So, I use my electric scooter to get from my house to the road. I can’t get down the hill outside my house without it. I used to rely on my manual wheelchair, but this wasn’t safe to self-propel down, and impossible to self-propel up. So I had to get a (fit and strong) person to do the pushing me up and down the hill. Which meant I couldn’t go out independently, for instance to work.

So, now I have the electric scooter. I use it in an “off-label” way to get up and down a hill that is far steeper than my OT head assesses as safe to use an electric scooter on, but I have limited options. The battery is being burned out fast, but it still keeps going, helping me to participate. I’ll cross that bridge when I come to it.

First class is more comfortable for disabled people

So, I ordered train tickets for collection. I can’t comfortably travel in standard, so I often buy first class tickets if I can afford it. There is a critical few extra inches of turning circle in First that means its less painful to travel in a wheelchair or scooter. I see this as a good use of my DLA. So, instead of a £17 ticket, to Sheffield, mine is a £35 ticket (return). To be honest, I’ve had that many experiences of the system cocking up that where there is an option to be more comfortable, I’ll take the hit.

Leeds station

As I arrive at the platform to depart in Leeds, there’s clearly panic from the guy at the station, who informs me

“you can’t get on the train- you haven’t booked special assistance”.

“Don’t be so ridiculous. I don’t need any assistance except the ramp to alight the train, and I can drive unassisted up it. Please just put the ramp down and we’ll say no more about it. Please let the Sheffield staff know I’m on my way.”

(Only here I am blogging about it. Tsk).

Sheffield first #access #fail

I got to Sheffield (after a lovely Bacon Roll and cup of tea- thanks Cross Country Trains!) and unfortunately despite checking with both the guy on the platform at Leeds and with the conductor on the train, there was no-one there to provide the ramp that I need to disembark the train. Madly waving at passers-by and frankly anyone in the area, I attempted to make them aware of my plight. This is always really panicky, the sense that if one isn’t noticed, one will be soon headed off far away (in this case, to Plymouth).

The conductor on the train had come to check I had disembarked safely, and was as annoyed as I was to see I was still waiting on the train, hanging out of the carriage and waving like a woman possessed in the vain hope that someone would offer assistance. He offered to use the ramp within the train to get me off it before he was due to leave, rather than wait for the station staff. So that’s what we did. Problem solved. He did tell me he had phoned the station staff to tell them I was coing, but then so had the ridiculous man at Leeds station, and I didn’t know if either of them were being honest.

Visit to Patient Opinion

I was met by the lovely Dr James Munro of Patient Opinion at the station, and we spent a couple of hours chatting with the team. It was lovely. Sadly, it was soon time to go home. I was dropped back at the station by Dr James Munro, who wasn’t able to stay in the drop-off zone for long.

Sheffield second #access #fail

I went into the station, and went to the platform the train was leaving from. Phew, 15 minutes to spare. So, knowing how often this is the critical time to make sure arrangements are properly made I looked out for station staff and train staff. Sure enough, several staff were floating around, so I made sure that I politely informed each of the that I was expecting to travel on the next rain to Leeds, that I would need the ramp, and that here I am, sitting next to the ramp ready for someone to attach it to the train so i can alight.

Each person I spoke to insisted it wasn’t their job to attach the ramp to the train, but not to worry, because

“someone will be along in a minute”.

Now, I’ve relied on “someone” before, and let me tell you, they’re not very reliable. In fact, “anyone” could have attached the ramp to the train. It doesn’t require much training.

The train arrives, and I nervously drove the scooter in between the ramp and the train, all the time telling all the staff I could see that I needed someone to attch the ramp. Everyone was sure that “someone” would be along to do it. I felt that the time was approaching for the train to leave, and was on my phone. I could see the conductor and train staff get onto the train and close all the doors. Then, the train pulled away.

Sure enough, “someone” had failed to materialise and I had missed my train.

So, I went back to the information desk to talk to the staff about how this had happened, and what to do next. I showed them my First Class anytime return to Leeds. They were apologetic, but said that there was nothing they could do. I told them about the morning experience, too, but they said that the fault was with both Leeds station (who hadn’t phoned in) and the conductor on the train (who hadn’t phoned in). Complaint form number 1.

They advised me of the next train to Leeds, which was run by Northern Rail.

Sheffield third #access #fail

I dutifully went to the platform (this time with a member of customer service) only to find myself confronted by the train conductor.

“Sorry, I can’t carry you in the scooter. Company policy” he said.

“Really? I said, ” this sounds discriminatory? surely this isn’t your company policy?”

“No, we don’t *BAN* scooters. But we only carry folding ones.”

“Oh. I see. well, luckily my scooter breaks down into seperate pieces and fits in any car boot. So you’ll be able to take me?”

“Only if you can carry all the bits of the scooter onto the train and put them in the luggage rack yourselves”

“Really? so if I had a heavy suitcase you would offer me assistance, but you’re directly telling me you refuse to carry any bits of my scooter onto your train?”


So, we carried on with this pleasant conversation. I was becoming less pleased with the service from Sheffield and Northern Rail by the second. But there was no shifting this man, who was convinced that his company policy overrode any national or international law and obligation to people with mobility issues, quite apart from having a human response and just helping a traveller out.

Fuming, I went to the platform supervisors office. Having already filled out a complaint about the train that had left without me despite seeing me waiting for assistance, Ithought I would fill out another form for this experience. The supervisor was apologetic, but helpfully printed off a policy document from Northern Rail stating that they did not agree to transport scooters, unless the mobility impaired person carried them onto the train themselves. So the conductor had been correct in interpreting company policy, it was actually an official policy to directly discriminate against people with disabilities and mobility isues.

I was informed of the next train, and started to wait. I had some time to kill, so I thought I would also complain about the morning when no-one had arried to help me off the train. Having completed a hat-trick of complaints I felt it was time my luck should turn.

Sheffield fourth #access #fail

The train to Leeds arrived, thankfully a Cross Country service, and so I started up the train to board. The platform supervisor had the ramp set up into Standard. I asked him if he would mind moving the ramp as I had a First Class ticket and wanted therefore to travel in First Class.

“No, can’t do it love. There isn’t time”

“Yes there is. It will only take a minute- the train isn’t very long. I’m not paying for a First Class ticket and travelling in Standard. Would you ask a non-disabled traveller to do so?”

“You never showed me your First Class ticket. How am I supposed to know you wanted the ramp into First Class?”

*turns to customer service person* “Hang on, I showed you my ticket about an hour ago, did you not see that it was a First Class ticket?”

“Well, you cant go in first anyway. There’s already someone in the disabled spot”

“Is there? that’s unusual. Well, if thats true, well have to work something out. Let’s go and see.”

So we went down the train. the platform supervisor joined me, swearing and muttering all the way down the train in a most unfriendly manner. He obviously didn’t see the reason why I should not want to accept his kind offer of help into Standard and insist on travelling in First.

We got the ramp up, and I drove on to the train. Suprise, suprise, there wasnt anyone in the disabled spot. There was a whole family’s luggage in the disabled spot. The family memebrs startted to remove the luggage with guilty faces, avoiding eye contact with me, and placed it all in the luggage spot. I’m familiar with this from the people who guiltily come back to cars parked in disabled bays without Blue Badges. Only “popping in” to the shops and they get away with it. I dont know if they had refused to move the luggage and therefore the train operator had to offer me a standard space, or if they had simply not been asked to move the luggage despite the clear signage that the space was protected for people with disabilities by law. But, they were only “popping their luggage there” it’s not like it was going to impact on a disabled person, now is it? They were not reprimanded, or fined, or saw any consequence to their actions. No wonder the guilty faces.

So, for people wondering why you dont see so many people using wheelchairs and scooters in your local train station, in your workplace, in your church or social club, down the pub, out in town, taking their kids to ballet lessons, or cheering on their kids at football, how about reflecting on this journey and think about why that might be.

And also have a think about the planned reform of DLA and replacement with PIP. Large numbers of people who have mobility needs will not be assessed as needing any help on the basis that our country is now proudly accessible to all.

I can’t think of a better word to describe this than sick.

#wheelytrek- my first solo train journey in a wheelchair

I haven’t been able or confident enough to do any travelling since becoming a wheelchair user. Partly, this is due to the pain and fatigue that I get whenever I’m in a moving vehicle. It’s also because it has taken until now for me to feel confident enough that I could navigate/stay awake/be safe until I reached my destination.

Today, I travelled from Leeds to Birmingham. Once, this wouldn’t be cause for comment or celebration- I took for granted just how easily I navigated this country. Now, it feels like a major achievement.

I can’t fault the assistance that I received today from Cross Country Trains on the phone, and the train, and from the staff at Leeds and Birmingham railway station. I think my experience is an example of how it _should_ be for people with disabilities when travelling. Bravo to everyone involved. Particular thanks to my kind neighbour who has so often taken me places in his car when I have been worried about journeys. Truly, I couldn’t have done it without his help.

I plan to blog the after-effects of the journey, as I’m going to a two-day conference here and then returning on the train. It’s going to be a massive milestone for me. Wish me luck!

Here is the Grabchat of today’s attempt to Live-Tweet the journey.



@claireOT @gmd2

Top resources

Related tags

#spoonie #wheelchair

See Twitter for more tweets, people, videos and photos for #wheelytrek

@claireOT #wheelytrek 1st problem-how do I transport as suitcase and self-propell my #wheelchair ?(Tue, 08 May 2012 10:58:54 +0100)
@claireOT Best solution for eventuality no help appears- combination of straps attach wheeled suitcase to back of chair #wheelytrek (Tue, 08 May 2012 11:10:39 +0100)
@claireOT Okay, Richard from CrossCountry trains assures me all the assistance is correctly booked, so I won’t need my strapping system #wheelytrek (Tue, 08 May 2012 11:33:59 +0100)
@claireOT *takes straps and discreetly keeps in handbag just in case* #wheelytrek (Tue, 08 May 2012 11:34:33 +0100)
@claireOT I’m hoping they will, since I’ve told them I’m going to blog the journey & share with other customers with disabilities #wheelytrek (Tue, 08 May 2012 11:36:03 +0100)
@claireOT @SabreStairlifts @Robyn_Brockie @KennerleyWendy @smclrk thanks all for kind wishes, crossed fingers etc. I set off at 2pm. #wheelytrek (Tue, 08 May 2012 11:42:46 +0100)
@claireOT @sexyswinging @sanabituranima yes, hope it all goes swimmingly, hoping it gives me the confidence to try travelling more #wheelytrek (Tue, 08 May 2012 11:44:08 +0100)
@claireOT If I can make it to Birmingham today, that means I can definitely get to see my pals at @patientopinion in Sheffield soon! #wheelytrek (Tue, 08 May 2012 11:45:23 +0100)
@claireOT Okay, T minus an hour before the #wheelytrek launch. Still to do: take tablets. Book taxi. Cashpoint.(Tue, 08 May 2012 12:49:45 +0100)
@gmd2 Good luck wishes to @claireOT with #wheelytrek (Tue, 08 May 2012 12:55:31 +0100)
@claireOT And, we’re off! Thanks to my fab neighbour for lift to cashpoint and on to station #wheelytrek (Tue, 08 May 2012 14:36:04 +0100)
@claireOT Now pitstop for cash. #wheelytrek (Tue, 08 May 2012 14:44:24 +0100)
@claireOT Thankfully managed to use ticket collection machine from wheelchair (only 2 failed attempts) #wheelytrek (Tue, 08 May 2012 15:55:01 +0100)
@claireOT Assistance! The booking system worked! #wheelytrek (Tue, 08 May 2012 15:55:05 +0100)
@claireOT Fortunately they remembered the ramps and gave me a push up. Thanks train guys! #wheelytrek (Tue, 08 May 2012 16:05:46 +0100)
@claireOT Wheelchair space already taken on train 😦 so, got an upgrade, yay! 🙂 #wheelytrek (Tue, 08 May 2012 16:06:31 +0100) 
@claireOT One has just been informed that one wont be able to have a meal due to being an interloper on a standard ticket. #wheelytrek (Tue, 08 May 2012 16:16:06 +0100)
@claireOT I didnt know they offered one food and drink in first class- so have settled for a cup of tea #wheelytrek (Tue, 08 May 2012 16:19:15 +0100)
@claireOT Mmmm… coffee… just the job (especially cos 1) made in cafetiere and 2)free!!) #wheelytrek (Tue, 08 May 2012 16:20:50 +0100)
@claireOT My new pal Rennee and i, we like it in 1st #wheelytrek (Tue, 08 May 2012 17:02:51 +0100)
@claireOT Oh hai Chinatown! A lovely surprise to find myself here. Feels like I’m on holiday. #spoonie @ #wheelytrek (Tue, 08 May 2012 19:43:06 +0100)
@claireOT @smclrk am a bit exhausted, but made it with style! first class upgrade! see #wheelytrek for details of the trip x(Tue, 08 May 2012 20:37:44 +0100)

#BADD12 Archive of Tweets

Yesterday was the 2012 Blogging against Disablism Day.

I contributed my post, along with many other people who have disabilities, and I have to say that reading the blogs was a profound experience for me.

My emotional reactions to the stories described ranged from a collegiate feeling of familiarity with the experiences described, to outright rage at some of the experiences (that we just don’t hear about through the mainstream media), to pride to be part of this emerging activist population of people with disabilities working together to combat disablism.

Disability Pride

Goldfish posted this great video, outlining the rationale behind the expression of Disability Pride.

Video courtesy of the excellent Diary of a Goldfish blog, see

Tweets about #BADD12

One of the most impressive aspects of the blogs produced this year was the sheer quality of the posts. I hope you’ll feel able to visit the master site, where you will see links to all the posts online (so far!)

Please see

Involved in #BADD12

Top resources

Related tags

#badd12 #a11y #disability #access #badd

See Twitter for more tweets, people, videos and photos for #BADD12

#BADD12 Tweets

@insightsempire Blogging Against Disablism Day is Tuesday, May 1st 2012 #blogging #disability #inclusion #BADD12 (Tue, 01 May 2012 01:31:27 +0100)
@slewth It’s Blogging Against Disablism Day! 1 post to wite, 1 post read, many more to go! #BADD12 #disability #a11y (Tue, 01 May 2012 10:35:32 +0100)
@claireOT #BADD12 Blogging Against Disablism Day (Tue, 01 May 2012 13:26:07 +0100)
@claireOT #BADD12 Blogging Against Disablism Day (Tue, 01 May 2012 13:26:30 +0100)
@MargoJMilne #BADD12 Blogging Against Disablism Day via @claireOT (Tue, 01 May 2012 13:32:27 +0100)
@BendyGirl #BADD12 Blogging Against Disablism Day via @claireOT (Tue, 01 May 2012 13:34:22 +0100)
@onmybiketoo RT @BendyGirl : #BADD12 Blogging Against Disablism Day via @claireOT (Tue, 01 May 2012 13:34:48 +0100)
@legalaware RT @BendyGirl : #BADD12 Blogging Against Disablism Day via @claireOT (Tue, 01 May 2012 13:35:03 +0100)
@Beebba55Brenda RT @BendyGirl : #BADD12 Blogging Against Disablism Day via @claireOT (Tue, 01 May 2012 13:36:55 +0100)
@Blondenanja RT @BendyGirl : #BADD12 Blogging Against Disablism Day via @claireOT (Tue, 01 May 2012 13:40:16 +0100)
@BrandonTrust RT @BendyGirl : #BADD12 Blogging Against Disablism Day via @claireOT (Tue, 01 May 2012 14:28:40 +0100)
@lilacwheelz RT @BendyGirl : #BADD12 Blogging Against Disablism Day via @claireOT (Tue, 01 May 2012 15:31:29 +0100)
@claireOT ? @BendyGirl : How can it be right to profit from disability? via @guardian ? <topical for #BADD12 (Tue, 01 May 2012 16:42:09 +0100)
@pfanderson RT @claireOT : ? @BendyGirl : How can it be right to profit from disability? via @guardian ? <topical for #BADD12 (Tue, 01 May 2012 16:43:03 +0100)
@claireOT Oh, this story is familiar #BADD #BADD12 (Tue, 01 May 2012 17:30:36 +0100)
@Ermintrude2 #BADD12 Blogging Against Disablism Day | OT on wheels via @claireot (Tue, 01 May 2012 17:38:29 +0100)
@claireOT Crumbs. This chronic pain post is familiar, too #BADD12 #BADD (Tue, 01 May 2012 17:39:46 +0100)
@marilf000 Follow @BADDtweets today for links to the most moving inspirational blogs by sick & disabled people. #BADD12 #tearsandcheers (Tue, 01 May 2012 17:41:39 +0100)
@GrannyWils RT @claireOT : Oh, this story is familiar #BADD #BADD12 (Tue, 01 May 2012 17:54:14 +0100)
@ClaireBenjamin4 Closing #Remploy + #benefitcuts + failing #economy = #disablism #BADD12 (Tue, 01 May 2012 18:13:09 +0100)
@claireOT Excellent analysis of caregiver abuse, perhaps worth using in #socialcare training #BADD #BADD12 (Tue, 01 May 2012 18:20:57 +0100)
@claireOT RT? @MargoJMilne : #BADD12 Blogging Against Disablism Day via @claireOT ? thanks for the RT!(Tue, 01 May 2012 18:33:27 +0100)
@claireOT @BendyGirl thanks for RT of my blog today. Fantastic posts coming out of #BADD12 especially yours, K x(Tue, 01 May 2012 18:34:36 +0100)
@carl_chambers RT @ClaireBenjamin4 : Closing #Remploy + #benefitcuts + failing #economy = #disablism #BADD12 (Tue, 01 May 2012 19:03:18 +0100)
@tamworthnews RT @ClaireBenjamin4 : Closing #Remploy + #benefitcuts + failing #economy = #disablism #BADD12 (Tue, 01 May 2012 19:40:48 +0100)
@slewth Problems publishing my post to blog for #BADD12 – still hoping it’ll be May 1st in the USA when I get it online!(Tue, 01 May 2012 21:51:43 +0100)
@Accessible_Info RT @GaryAWTS Being Driven Round the Bend: #BADD12 #disability #access (Tue, 01 May 2012 23:19:27 +0100)
@VALibrary RT @Accessible_Info : RT @GaryAWTS Being Driven Round the Bend: #BADD12 #disability #access (Wed, 02 May 2012 01:39:19 +0100)
@VALibrary RT @Ermintrude2 : #BADD12 Blogging Against Disablism Day | OT on wheels via @claireot (Wed, 02 May 2012 03:06:04 +0100)
@Accessible_Info Blogging Against Disablism post: Your Ingenious Life #BADD12 #advocacy #access #dignity (Wed, 02 May 2012 03:09:28 +0100)
@DutchessTheDog RT @Accessible_Info : Blogging Against Disablism post: Your Ingenious Life #BADD12 #advocacy #access #dignity (Wed, 02 May 2012 03:19:50 +0100)
@onmybiketoo RT @marilf000 : Follow @BADDtweets today for links to the most moving inspirational blogs by sick & disabled people. #BADD12 #tearsandcheers (Wed, 02 May 2012 09:33:05 +0100)
@slewth Finally! My contribution to Blogging Against Disablism Day!: Science & Tech & Disability Studies #BADD12 #a11y (Wed, 02 May 2012 12:56:41 +0100)
@slewth @naomi_jacobs Just got mine posted! Worth doing if you still can 🙂 #badd12 (Wed, 02 May 2012 13:04:09 +0100)
@stcaccess Science & Tech & Disability Studies. @slewth ‘s thoughts are relevant for #eLearning . #BADD12 #a11y (Wed, 02 May 2012 13:14:07 +0100)
@slewth . @sloandr @briankelly @martyncooper My #BADD12 post reviews a useful paper on #disability as interaction. #a11y #UX (Wed, 02 May 2012 13:14:45 +0100)
@cfidurauk RT @stcaccess : Science & Tech & Disability Studies. @slewth ‘s thoughts are relevant for #eLearning . #BADD12 #a11y (Wed, 02 May 2012 13:17:43 +0100)
@dwoodbridge RT @stcaccess : Science & Tech & Disability Studies. @slewth ‘s thoughts are relevant for #eLearning . #BADD12 #a11y (Wed, 02 May 2012 13:21:40 +0100)

Disablism with friends

This event is still making me feel cross and it happened almost a year ago, so I thought I would post about it.

As you know, I’ve been using this wheelchair since spring 2010.

I want to talk about relates to a disablist attitude about inclusion of people at social events.

I was invited to a party, a Christmas party, in fact.

So I asked if the venue for the do was wheelchair accessible.

Err…. I’ll get back to you about this one.

No problem. They probably haven’t considered it when booking the venue, but now they have the head’s up, so I’m sure they will make sure I can get around in the venue.

The next day, the phone call came.

We’ve checked with the venue, and you’ll be fine in the wheelchair there. We can book a table on the gorund floor.

I know this venue, are you sure it’s wheelchair accessible?

Well, there is a small step on entry to the venue. But I’m sure we can get you up there.

And, um… where are the toilets and do they have a disabled loo?

Well, the toilets are downstairs. But don’t worry, if you need to go, one of us will carry you down the stairs.

Err… I don’t think I’ll be able to come, after all.

How can I begin to explain to this person how I would rather just not attend an event than have to ask to be carried to the loo if I need to go?

Who, exactly, is supposed to be doing the carrying? Is there going to be a man taking me in and out of the women’s toilet? Because I don’t think any of the women could manage it.

How does carrying me protect my joints and stop me from being injured by the experience?

Do they realise how blooming terrifying it is to be disabled, dependent, and potentially carried (dropped) by someone after a few drinks?

So, as with numerous other events, this was another one I just didn’t attend. Although I’m sure they didn’t mean to, the people organising it were not making reasonable adjustments for me- they were perpetuating the social barriers that ensure that people like me remain disabled. And it wasn’t necessary. There are venues which have disabled toilets on ground floor level. It was just that this particular party of people wanted to attend somewhere that didn’t have any ability to include wheelchair users in any meaningful way.

My disability is obvious, and a wheelchair user is easy to accommodate if you just check with the venue before booking. Any person with a disability/mental health need is able to let you know any additional needs they may have when considering booking a venue. They are waiting for you to ask.

So, if you’re planning a Christmas party, please don’t exclude your friends by failing to make simple changes to your plans that enable them to participate.

Going out? maybe…or maybe not; in which I discuss problems booking out the wheelchair taxi service

Going anywhere is just getting harder and harder. I’ve been using a fantastic alternative travel service (it’s a social enterprise, so I’m praying it will continue through the Social Care mass extinction we are seeing at the  moment). The driver has been able to come to the door, manhandle the wheelchair into the street and brace it as I stagger across on my crutches and get into the chair for the short trip down the hill. Then, they have been leaving me next to the accessible transport vehicle, and going back up to the house to collect my youngest in her car seat. She is so good, most babies wouldn’t stand for it, but she happily goes along with this, gets strapped into the vehicle, then they get me in and strapped up, and away we go. On the way back, we reverse the process.

Well, not any longer. As if things weren’t difficult enough, they have changed management, and re-risk assessed all their clients. I was told that I now require two drivers for each trip. One to take care of me in the wheelchair, and one to carry the baby seat. Apparently, this now has to happen simultaneously. The difficulty is that clearly they don’t have a whole load of drivers sat around all day- they are already booked out on jobs. So it is now even harder to book out the transport that I need.

So this week I was due to go to see my Physiotherapist. I couldn’t go, because the transport company only had one driver available and I needed two.

Just another reason to get brought down by the mundane hassles and constant struggle my life has turned into.

What’s the access to my house like? Rubbish. And here’s too much information about how it is in the house, too…in which I discuss adaptations and equipment, transfers and coping strategies

I am in a wheelchair, but live in a very inaccessible home.

The access to my home is up a 1:4 gradient on a pedestrianised hill. The closest to my gate a vehicle can park is 80 metres. I’ve always enjoyed this- the neighbours are friendly, I have a garden extension in the street, there’s less traffic noise and pollution.

But it’s a nightmare now. I can’t safely propel a chair up or down the street, so am dependent on others who are strong enough to manage to keep control of the chair on the way down, or push me allthe way up. When I get to my gate, I have to get out of the chair onto crutches, because the step into the yard is not accessible in the chair. Once across the yard, I then have 4 very steep steps up to the threshold of the house.It’s simplest to crutch my self from the gate straight into the house, if someone can open the door. I can then perch on the arm of the sofa to get my breath back.

My house is err…let’s say “compact”! It means that once in it, it’s very difficult to move about in the chair- luckily, everything on the ground floor is close enough to be crutched to, so I tend to leave the chair folded up near the door for the next time I’m going out. I move from the sofa, where I have the choice of sitting or side lying, to the dining chair, and can crutch into the kitchen in my fetching velcro girdle to make a drink or some food. I can stand briefly in the girdle- for perhaps 10 minutes, before the pain gets on top of me, and I have to go back to the dining chair or the sofa.

I can use my computer side lying on the sofa- hence I’m trying to use blogging, twitter etc to deal with the lack of other activities. I can sit briefly at my dining table, but can only sit for an hour before the pressure on my pelvis becomes uncomfortable. I find it is a cumulative process- once I’ve had my hour or two in total sitting in a day, it’s side lying only for the rest of the day.

I am limiting the number of times in a day I go up and down the stairs, which I do by hanging on the bannister and using the crutch in the other hand. Or, at the end of the day, I go up on my bottom (sobbing from pain optional). I have no need to go upstairs during the day except to use the bathroom, or if I have totally given in and am retiring to bed. Mostly, I avoid going up to the bathroom by using a urinal which I can use and store in the kitchen until my partner gets home. It’s the most humiliating part of this situation, that this has become an unspoken agreement between us- that if he finds it has been used he discreetly empties it and disinfects it.

When I’m upstairs, I need help to get in and out of the bath. I use my OT skills to talk myself through the transfer- I don’t use a bath seat because I prefer not to have adaptive equipment in the bathroom where my toddler could be tempted to use/misuse it. I can’t reach into the bath to put the plug into the hole- my partner tend to run the bath for me before I go upstairs. To get in, I sit on the bottom corner of the bath, get both legs on to the side of the bath whilst being steadied by my partner, then get legs into the bath. I then edge across the bath ’til I’m centralised, and lower myself down on my arms. I have strong arms- which I am now incredibly grateful for! Getting out is the reverse process. Needless to say, I am unable to use the bath or shower if I’m in the house alone, since I am unable to guarantee my safety doing any of this….there’s always the possibility of needing to be physically manhandled out.

I avoid using a raised toilet seat because getting my toddler to retain her independance in toileting is very important to me. This would be very difficult for her if the toilet had a raised seat. I lower myself down gingerly, and use pressure on the crutch handle in front, and a hand behind on the toilet seat, to get back up.

Getting in and out of bed is far easier since I had a bedstick installed. This is a chrome handle at the side of my bed, which I can use to help lower me down or raise myself up. To get into bed, I sit on the bed, grab the bedstick, then simultaneously lower down top half whilst raising legs (keeping legs together), with knees bent, onto bed. Getting out of bed, or into upright in order to take painkillers is the reverse.

Once I’m in bed, due to being 7 months pregnant I lie with a long pillow alongside me. This goes between my knees and ankles, keeping my legs at the correct angle to my pelvis, and also goes underneath my bump to support my back. I can then hug the top of it (again, sobbing optional).

I then put on my splints- did I forget to mention? Another pregnancy complication- I now have carpel tunnel syndrome in both hands and have fetching splints (velco and fabric) to be applied to keep my hand and wrist in neutral whilst sleeping- which helps the fluid drain out and reduce the pain and tingling in my hands. I would upload a picture, but I am sure the mental picture you have is more fetching!

All pregnant ladies go to the toilet several times during the night, especially when they get so big the baby is pressing on the bladder. I’m able to utilise my urinal in the night to avoid this- but unforunately I am still having difficulty getting over my socialisation that you do not release urine over a carpet, nor in the bedroom, nor when sat on the side of the bed next to a sleeping partner. But I’m getting there. It definetely reduces the pain I feel in the morning, when I’m waiting for the first painkillers of the day to kick in, if I have gone through the night without crutching to the bathroom.

A final point- part of the pelvic thing that’s going on. When I either get from lying to sitting or turn over in bed, the bones in my pelvis grind against each other, and “crack”. This is an unexpectedly loud noise, which can wake sleeping partners. It arrives quicker than the pain, which follows speedily after…. but as any Pavlovian conditioned animal will inform you, I only have to hear the crack in the middle of the night to start crying. So far, I haven’t been disappointed by the pain, when it arrives.

So if you find I am grumpy when you come round, and find the house messier than it usually is, or if I ask you to make us both a cup of tea, please understand it’s because this process is difficult, embarrassing, painful and unremitting.

I’m really glad you dropped by for a chat.

What have you been up to today?