Wednesday, 1 November 2017

Buses, buggies and wheelchairs

Yesterday I travelled to London by train, then across London by bus. This 3 buses there, and 3 buses back.

That's quite a lot of bus!

The journey out was uneventful.

The journey back was another story.

At the bus stop there was mum 1 with a buggy waiting next to me, for the same bus. We chatted a bit.

The first bus wasn't very full, and the wheels space was empty.

As she got on, she asked the driver to put the ramp down for me.

"No, sorry. We can't have a buggy and a wheelchair on the same bus."

"But we can both fit safely!"

"Nothing I can do. It's company policy."

Mum 1 started to get off the bus so I could get on, willing to stand in the cold for longer for my sake - but given that she had a young child, and I had ages before my train was due, I decided I'd wait for the next one.

I waited.

The next bus to arrive already had a buggy on. Fortunately the driver didn't bat an eyelid, let down the ramp, the mum shifted the buggy so we shared the space quite happily.

Phew!

I reached the next change-over point without problem.

The next bus arrived. I'd been communicating with mum 2 with a buggy through gestures (I'm not sure whether her English wasn't good, or she was hearing impaired, but either way: gestures worked) we were both awaiting the 29 bus, which was, at last, approaching, and fingers crossed we could both get on.

Mum 3 with a buggy was already on the bus. The ramp came down and as I went up, the driver checked which stop I wanted to get off. Being me, I couldn't remember! It was half an hour away and I'd planned to check my phone to remind myself once I was on the bus. I settled into my space without problem - the buggy was moved to let me in.

As we drove off I realised that I'd inadvertently left mum 2 at the stop. I felt bad. Disappointed for her, and hoping that she and her child wouldn't get too cold. I didn't hear anyone ask mum 3 if she could fold her buggy, nor asking mum 2 that same question.

3 minutes later at another stop, the driver popped back to where I was sat and checked which stop I was headed for. I'd worked it out by this time, so I could answer.

All was going well.

Until 10 minutes later he pops his head around my corner again "I'm really sorry. Our schedule has been changed and we have to terminate at Mornington Crescent -a few stops before you want to get off. Will you be OK from there?"

I checked the route of my next bus - it had a stop 20m from our terminating stop, so it was actually fine. But it was really nice - and reassuring - that he took the time to check I would be OK rather than just kicking me off. Looking back though I feel a bit strange. He treated me so well - as a disabled person I was clearly high priority - which is a big change from the second-rate treatment we often get (access to posh venues through the bin stores, being a speaker at an event where they forget to make the stage accessible, being treated as if asking for access is a nuisance etc), but at the same time we'd left mum 2 behind, and the same effort hadn't gone into finding a solution for her.

I was left thinking:
1. What really is the policy/procedure for carrying buggies and wheelchairs on London buses? Can they take more than one at once? The variation between drivers means the policy isn't clearly understood by them all. And if it really does only allows one buggy OR one wheelchair, it's a bit daft (I say this as a retired Environmental Health Officer, qualified to enforce health and safety in various places, as well as a wheelchair user.)
2. Being left at a bus stop because a small child is in your space sucks.
3. Leaving a small child out in the cold because you are in the space they need also sucks.

Yes, driver training might help, but I think perhaps what will help most is a pragmatic and practical policy based on 'how can we safely fit the maximum number of wheelchairs AND buggies onto our buses'. Not 'which takes priority', but 'how can we take everyone.'

Except at rush hour when the bus is fit to burst and people have to be left behind -wheels or not. Then, perhaps, the answer is more buses at that time of day.






Tuesday, 17 October 2017

Pacing, disability and illness.

As a general rule, I don't refer to my disabling conditions (HSD, POTS etc) as being ill or being sick.

Why - when they can make me feel so very ill?

Because if I see my normal as 'ill' then when I get a common illness (cold, stomach bug etc) I find it harder to have sensible strategies for dealing with it.

For example: I currently have a cold - with all the standard symptoms.

But in addition, when my body is fighting an infection my POTS is worsened too and I get a racing heart and horribly dizzy every time I cough. And the fatigue makes joint control and EDS management more difficult - everything kind of plays of everything else. Unfortunately this means that mild infections that many average people could 'take some meds and power through' really knock me down.


My normal pacing rules are for 'healthy me'.

I have different rules for 'sick me'.

So right now I'm operating on sickness rules.

This includes: blankets. TV, Kids DVDs, or 'pride and prejudice'), naps, lots and lots of tea, carefully chosen meds, that don't mess with my heart (no standard cold meds with phenylephedrine!) and time off work. Because experience says this helps me get over it and back to 'healthy me' quicker.

And as a result I don't worry that my POTS and EDS are worsening - I can have a sulky moment about having a cold and feeling rubbish, safe in the knowledge that it will pass, and I will start to feel better again soon - and at that point I will switch back to 'healthy me' pacing.

Ok, so I'm writing this which is technically work.

But this is all I intend to do today.

Because I'm ill.

And taking time off work when I'm ill is a very constructive thing to do.

[Note: This works for me, with my combination of conditions. It won't work for everyone.]
[Also note: This won't affect orders from our shop - because I have a very handy PA!]

Friday, 13 October 2017

Rochdale Autism Conference

Yesterday we were at the Rochdale Autism Conference with our stickmen.

Although the lecture room was too hot to get more than a few snippets of 2 of the many talks, I was impressed with what I heard.

There was one about body language - I heard the section on eye contact. Rather than saying 'teach them to make eye contact' it went through some of the unspoken and unconscious 'rules' that many NT's know by instinct but aren't always conscious of, like that if you look anywhere in the triangle between tip of nose and outside of eyebrows (including they eyes) - that communicates interest and listening. Looking at the mouth is flirting behaviour - or means they have spinach in your teeth or are lip-reading. It really highlighted the importance of not trying to force rule-compliance, but creating rule understanding- and also realising that we don't have to make eye contact - focusing on the bridge of the nose, for example, can be just as effective in communicating that interest. (at this point I melted and had to leave)

The talk by Ros (an autistic woman) was brilliant - very real. Pointed out the absurd communication contradictions "would you like to sign in" means please sign in or I'll get stroppy. But "would you like a cup of coffee" 30 seconds later means "you can if you want, but you don't have to". - but how is she supposed to know when it's giving an option and when it's a 'polite' demand? - which NT's just seem to 'know'. Because the NT's automatic is an autistic's conscious and constant learning process and logical 'working things out'. Similar issues with deciphering 'can you' - is it an "are you theoretically capable of it" or a request that you do it now?

She also covered things like how dealing with money in the classroom was fine - she was good at maths. But in a shop? - not a chance. one mars bar is 50p, the change from £1 will be 50p - she knows this - put mars bar on the counter...and it becomes a social situation 

"isn't it lovely weather" 
...where did that come from? What has the weather got to do with the cost of a mars bar? 
"Would you like our carrier bag?" 
why are they asking for my opinion on a carrier bag? Do they mean do I like the colour, or the design? Is it some new marketing campaign that they are researching? If I say no, will they get really upset? 
- all these thoughts and processing taking up the space needed for processing the actual transaction she came to complete and creating a very stressful situation.

She spoke about how these situations aren't things autistics are incapable of understanding - but that they all need to be consciously learnt - rather than instinctively picked up. Which takes masses of energy and concentration - and can also come with a feeling of huge pressure to get it right because everyone else seems to get it so easily - and a sense of failure when they get something wrong that everyone else finds obvious. 

As a non-autistic, it was both refreshing and eye opening to hear about autism in a way that was so real, and practical and lived. I wish I'd been able to hear her whole talk, but the heat said no so I had to leave for somewhere cooler to lie down.

It made me realise how vital it is that I am direct and clear with how I say things. And not to underestimate the energy expended by an autistic person navigating social interactions.

They also had a group of autistic teens talking about their experiences. I didn't hear this part but the feedback I heard about it was great.

And from a stickman point of view - it was good. The only downside was that the room with the exhibitors in was small and got really crowded. I think a lot of autistic visitors didn't make it into the exhibitors area although a lot of the professionals did.

Having said that, we had lots of people discovering our resources for the first time. And lots of great feedback - especially on the status squares, wristbands and keyring cards.

We had one fascinating incident where we tried (I'm not sure how successfully) to explain to a non-autistic adult that stickmen weren't just for primary school children, but were designed with teens, and adults, and that the colour and humour helped break down barriers and assumptions - making the cards more effective. We know not everyone likes the colour and simplicity - that's fine. We all have to find what works for us. But this individual firmly believed that no autistic teenager would use them. A little voice of doubt started to question my work. Then an autistic teenager came over - and went flappy at the 'Go Away' card - which was actually borrowed later in the day (with a lanyard) after an overwhelm happened, and they'd recovered enough to go in and listen - but were not ready to interact with people. 

All in all an exhausting, insightful, and worthwhile day.

Sunday, 8 October 2017

Autism and adapting the language on our cards

This is not a blog about what language should be used.

It is a blog about some changes we are making to our cards in response to customer requests.

During initial card creation (in consultation with autistic people) 'person with an autistic spectrum condition' was chosen as it includes those who are on the spectrum but don't identify as autistic. Since then, it's become clear that lots of autistic people - including all my customers that I've spoken to recently - prefer "I'm autistic" - and that not all cards need to mention autism.

So we are re-wording some of our cards to try and find the right balance. On cards likely to apply to people who don't identify as autistic we are trying to change the wording to make them generic instead of autism specific, and changing autism-specific cards to read "I'm autistic". Below are the cards which currently mention autism specifically, and the changes we are suggesting - but before we finalise them over the next few weeks/months, please let us know your thoughts by commenting on this blog post, or replying to the relevant posts on twitter or FB. We won't be able to do what everyone suggests, but we will take all views into account as we come up with the final versions.

1. Current ASC eye contact card:

Suggested edit: "Please don't worry or take offence if I don't make eye contact - I find it difficult and it can make it harder for me to follow conversations or process what is happening." (So it becomes a general card applicable to anyone who struggles with eye contact) (I would be especially interested in feedback on this re-wording as I suspect there are other reasons eye contact may be difficult too so I need a bit more input to make this the best it can be.)

2. Current "Autistic, not naughty" card

Suggested edit: 
Replace the first sentence with: "My child is not being naughty, they are autistic." (rest of card to remain the same.)

3. Current 'Overwhelming' card


Suggested edit: "I'm autistic and find this situation overwhelming. Please let me have the time and space I need to calm down." [Edited to add: This is already also available as a general card with no reference to autism]

4. Current: "Don't stand to close" card

Suggested edit:
Replace middle sentence with: "I am autistic." (the rest of the card to remain the same. - this card is also available with no reference to autism)

5. Current ASC disclosure card:
Suggested edit: Replace first sentence with: "I'm autistic." (the rest of the card to remain the same.)

6. Current ASC new routine card:

Suggested edit: Remove 'I have an ASC' - and leave the rest of the card so it becomes applicable to all conditions where new routines are challenging.

7. Current ASC Personal Assistant card.

Suggested edit: Replace first sentence with "I'm autistic" - rest of the card to remain the same.

If you are autistic, on the spectrum or not-autistic-but-would-find-these-useful, please let us know your thoughts.

Thanks in advance!

Hannah

Thursday, 5 October 2017

An apology to staff at Niagara Falls.

(Note: Maid of the Mist is the boat that takes you up to the Niagara falls)

Dear 'Maid of the Mist' staff,

On the 19th Sept, I visited Niagara Falls with a big group of friends, and we went on the Maid of the Mist.

It is a lovely place. As it was such a hot day, being out on the water, in the mist from the waterfall was even more special.

But I feel I should apologise to the staff.

I didn't mean to terrify you.

You see, as an experienced wheelchair user who is young at heart, I love going down ramps. While I will always be in control of my chair, I will also go pretty fast when I decide it's safe to do so. My gloves giving me excellent braking power while avoiding friction burns. If a 'down' ramp is immediately followed by an 'up' ramp I will usually try and use a bit of the down hill momentum to help me up the next ramp.

I was with a large group - who all know me and are used to my approach to slopes. They are used to my normal.

So I went down the ramp onto the 'Maid' in my usual manner. In full control, knowing I had the space I needed, hoping to use my momentum to get up the second ramp, thoroughly enjoying the experience, and forgetting that you weren't used to my normal.....


I didn't expect you to jump in my path to save me!

It was impressive - and although it wasn't needed, it did show you were totally switched on, which I honestly appreciate.

I hope you have recovered from the shock. You coped admirably - trying to adjust from 'full panic stations rescue mode' to 'calm, helpful, polite, assistance mode' at a moments notice is not easy, but you managed it - and even stayed friendly and helpful despite the scare I gave you. I'm sorry if I made your hair turn gray.

Next time I'll give more warning of what I'm about to do and hopefully avoid any further traumatisation.

And thank you for letting me bum-shuffle up the stairs so I could join my friends on the top deck, and to the captain for showing me the best place to sit - while making me promise sincerely I wouldn't move fast while on the boat. I don't think his heart would have coped if I had!

So once again, I'm sorry for giving you all such a scare, but thank you for forgiving me, for being such a lovely bunch of people, and for giving me such a lovely time.

Your sincerely,

Hannah-on-wheels.

Friday, 29 September 2017

Airport Assistance: London Gatwick and JFK New York.

Assistance on my outward journey really was a tale of two halves. It could just as well be called 'The good, the bad and the ugly."

Round 1: Wheelchair Assistance at London Gatwick
Check in bags. Then directed to the assistance desk 15m away.

Arrive at assistance desk.
Friendly confirmation of who I am, which flight I'm on, and what assistance I'd like.
Explained I could go through the priority lane on my own, and then visit the assistance desk on the left the other side, where they would sort out when I needed to be at which gate, and help me get there. Or someone could help me through security and to the second desk.

I chose to take myself through. Assistance chap took me to the right security lane and wished me good luck. All good. Staff didn't fuss about the extra, liquid containing medical stuff I had (like the cool vests). I was through in minutes and found the next desk easily.

The gate number hadn't been announced (I was early) so the desk chap told me what time I'd need to be back at the desk to be taken to the gate, and was friendly and helpful.

I then pootled off for a bit (the priority lounge which I'd booked was cool, quiet and had soft sofas I could lie down on) then returned at the allocated time. There was a queue. But desk chap recognised me at the back of the queue and said "it's gate -. If you'd like help, I'll sort it in a minute, otherwise we can meet you there."

I was doing well after my lie-down, and wanted the exercise (the floors at Gatwick are really easy to push on) so I opted to meet them at the plane.

Off I went, following his directions. I found the gate easily, got ushered to the front of the queue for tickets being checked, and into the gate seating area, where they said if I went to the front someone would be there to help shortly.

Sure enough, with plenty of time to spare, someone came over ready to assist me. The 'plane wasn't ready yet, so he checked he'd got my requirements right, and we chatted til we got the go-ahead.

I got on the plane first - taking my wheels right to the plane door, where I'd chosen to 'walk' to my seat which was very near the door. Assistance didn't bat an eyelid at my asking to borrow his shoulder for support, and asked which bags I wanted stowing where - so I even had my 'in flight essentials' bag  and my cool vest accessible - and my rucksack went in the overhead lockers.

Assistance chap leaves.

I was left feeling like I have been treated like a person, like a valued customer. (I'm sure they didn't get everything perfect, but when you see what happens next, you'll forgive any 'rose-tinted spectacles' aspects of the memory!)

Round 2: Wheelchair assistance at JFK New York.

Arrive. Plane empties. I wait for my wheelchair.

"Your chair is here"
I borrow the shoulder of an air hostess and get as far as past-the-chairs-and-nearly-at-the-door. Someone else has just sat in the airport wheelchair. It wasn't for me. "Your chair will be here in a minute".

I wait - but I've used up my limited walking and standing. So I slide down the wall I'm leaning against and crouch/sit on the floor.

Another chair arrives. "Here's your chair"

"That's not my chair - can't I use my own chair?"

"No - this is your chair, get in"

(Note: it is the end of a long flight, and a longer day. Speaking is really difficult and long sentences are impossible for me)

I'd been warned that despite the law allowing them to fetch your chair to the 'plane door like in every other country I'd ever visited, they tend to force you to use an airport chair - however unsuitable. I hoped this only applied to powerchairs. I was wrong. True, their laws means chairs have to be checked by customs - but how that equates to 'must go on a conveyor belt, and may not be taken to the plane after being checked' I can't quite fathom. I lacked the communication skills and brain power to force the issue. So I got in their chair. (If you aren't quite sure why 'not my chair' is a big issue, don't worry, I'll do a blog on it soon.)

It was nearly foot wider than I am. A heavy chair I couldn't even move. On my chair all bags attach to the chair, leaving one small handbag with passport, money and water bottle on my lap and my hands free. On the airport chair none of them could hang from it so they were all dumped onto my lap like I was a baggage trolley.


Assistance guy wheels me away.

We reach customs and go to one of the machines where you fill in loads of details on the screen and stuff. He filled it in on auto-pilot, only stopping to ask me whether I had a visa or a waiver etc. He then got stroppy that I didn't produce my passport immediately he asked for it - instead I handed over my plastic wallet containing passport and paperwork. Given that I was also trying to keep hold of the large rucksack, 3 small cool bags and handbag balanced on my lap, with dodgy coordination, I'm impressed I could get anything out of my bag!!

He answered the 'what do you have in your luggage' customs questions - without checking with me first. Clearly he must have been psychic. And then said "put your hand there"- indicating the fingerprint machine at a good height for standing people.

Unable to move my chair to a better angle, I leaned forward and managed to reach the plate -but the angle of my hand was wrong (and uncomfortable) - so I was just lifting my hand to position it better when Assistance says "no" and pushes my hand back down flat, holding it firmly against the plate. I stare in bewilderment at my hand now at a very odd angle, while attempting to shift my upper body into a position that will ease the discomfort (and dislocation risk) of the contortion. Unable to think up appropriate words for "Back off, and let go!".

The machine is satisfied and Assistance releases my hand.

Next: security - it goes fine. Security chap is respectful, polite, and quick (I think I got lucky!)

We approach the baggage carousel. I see my wheelchair about 15m away - waiting for me. Sitting in the middle of the floor like an abandoned suitcase. The relief!! I say "that's my chair, can we get it?"

"No, bags first".

He parks me by the carousel. Then walks off. Literally. Fortunately I'd been left next to someone from my youth group - who got my cases off the conveyor while I sat totally incapacitated in a wheelchair I couldn't move, buried under a mountain of bags.

I wait.

Assistance returns. "Is that your wheelchair?"

"Yes" (very relieved no-one else has walked off with it!)

At LAST I get into my wheelchair. Custom made for me. A chair that gives freedom rather than imprisons me. That minimises my pain. The relief is indescribable. I am no longer at the total mercy of an inconsiderate stranger who treats me like annoying baggage.

I spend a few minutes getting all my bags rearranged onto it. Blissful freedom at last.

I look round. He's disappeared again. And as previously agreed with the youth group (who all had their hands full of their own luggage), we are all making our own way to our meeting point. I'd booked assistance so it shouldn't have been a problem.

The relief drains away.

I return to my cases which had been abandoned by the carousel. I have no idea where Assistance went - or when / if he'll be back. I wonder if there is any way I can get myself and 2 cases to our meeting point. Or whether I should call someone from the group to return and fetch me (although airport staff might not appreciate them trying to get back in through the exit!)

The baggage hall is now nearly empty.

Assistance returns! At last!

"Are these your cases?"

"Yes"

He takes them and walks off at speed.

I follow. Trying not to get left behind. Not sure where we are heading as I have to concentrate hard on overtaking other passengers as my cases get further and further ahead. I struggle to catch up. No time to read signs or get my bearings.

Through a doorway - and into the familiar sight of an arrivals lounge. All the people with name signs, or craning forward to see loved ones. I've made it out.

The relief is short lived. My suitcases are hiking straight out of the airport doors. Will this be the last I see of them?

Summoning all remaining energy
"EXCUSE ME! WHERE ARE YOU TAKING MY BAGS?"

He turns. Looks bemused - as if he can't fathom why I'm asking. Points ahead of him and says  "Outside".

Seriously? The assistance policy is 'Don't ask where someone is going, run outside with their cases and dump them'?

He comes back towards me looking annoyed at my interruption.

"Please take them through this door, then my group is the one on the left"

He wheeled my cases over there. And left.

I sighed with relief. I'd made it. I was back with people who treated me like a human.

I realise he might have been having a bad day, or a 'run off your feet' busy day - but the total lack of communication on basic points was....unparallelled. I've never experienced anything like it. Without spending any extra time and only minimal effort he could have said "your hand needs to be flatter against the plate to register your fingerprints" (No force required). And "I'm super busy, so I'll have to leave you by the baggage carousel while I fetch someone else, then I'll be back for you and your cases". He could have allowed me to switch to my chair immediately instead of making me wait for no reason (then I could at least have got myself to the loo while I waited!).  Oh, and "Where would you like me to take your cases - is someone picking you up, or would you like a taxi?". A little communication and respect would have transformed the whole experience.

And no.

He didn't get a tip.

Monday, 25 September 2017

A trip to the USA

I've been quite quiet recently.

Here's the reason: I was in the USA (Mostly in Connecticut and New York State) with the church youth group I'm part of.

It was exhausting, but fun.

I'm planning a few more detailed blogs on surviving the trip, my experience of UK (Gatwick) and USA (JFK) airport assistance, my trip on the 'Maid in the Mist' at Niagara Falls, and a few wheelie-related things about New York city.

In the mean time, here are a few pics from the trip.
(I'm not good at remembering to take photos - but I do have lots of good memories from the trip - which is the main thing, even if it doesn't translate well on a blog!)

 At Niagara Falls

Shopping


At Letchworth State Park

 

New York City from the Staten Island Ferry.


(the 3 pics above were taken by people with me - I can't take the credit for them!)

Central Park