Monday, 21 May 2018

Bad days with ME :: AxesnYarn





No Sunday Short yesterday I I hadn't prepped one in advance and my fatigue was too bad yesterday evening. This vlog explains a bit more about about that fatigue.

Sunday, 13 May 2018

RPG and podcasts and diversity!

Several month ago I played in a short one off RPG game called Unfamiliar Heroes - a homebrew RPG system written by Fay Onyx of podcast and blog Written Alchemy. Fay focuses on creating stories fantasy and games with greater diversity. Zer skill isn't just in putting in different faces when it comes to describing characters but considering how their individual differences may impact and help shape those stories. Our game of Unfamiliar Heroes, with Fay GMing, brought together three players with disabilities, chronic illness or neurodivergance. Additionally we created characters that had their own disabilities or access needs and these played an important role in the story. We were encouraged to consider not just what issues the characters may face but how in this magical fantasy world we might manage those issues without erasing them.

The game has been split into several episodes, the first of which are already up, introducing the characters. You can find the series at Written Alchemy, and my episode introducing Taragon Songsteel the orc bard is here.

Our adventure was dubbed The Owlbear Reintroduction Program

ink sketch of an Owlbear 

I also had a part in a short play for the podcast Monsters Out Of The Closet. MOOTC bills itself as a LGBT+ horror fiction podcast and that sums it up pretty well. Each episode has a loose theme with one or two short performances of horror fiction. There is a consistent thread of LGBT+ representation throughout the series be it in plot or characters.
I appeared in Episode 7 - Haunt in the piece Lossless by Taara Rangan.

It was a new experience for me and something I hope I get the chance to repeat!

Sunday, 6 May 2018

Sunday Shorts: Seriously, stop making rape jokes.

Two screen grabs of a tumblr post, side by side. There are four panels of gifs from a TV show showing John Barrowman and another man. Transcription below. 
Two screen grabs of a tumblr post, side by side with text. Transcription below 


Picture 1:
[straight-as-a-protractor] Screen capture of John Barrowman presenting a gameshow. The caption reads: "On a clothing care label, which instruction is indicated by a solid black triangle with a cross through it?
Screen capture of a white, bald man on the gameshow. The caption reads: "This is where we want the women in the team back, don't we?"

Screen Shot 2: Continuation of the post by [straight-as-a-protractor]. Screen capture of John Barrowman . The caption reads: "Or maybe you could help with the cleaning of the clothes every so often.
Screen capture of John Barrowman, smirking.

[mmmahogany] #John Barrowman is having none of your misogynist bullshit.

[xgenepositive] I love that Barrowman's response also distances him from the contestant.
"hahahaha women do laundry, right John? you with me john?" 
John "don't lump me in with you, you fucking martian"

Picture 2:
[solarbird] This is what I am talking about when I say that men have to deny the endorsement. This guy wanted Barrowman's tacit support or agreement for his sexism, as part of bonding through humour. John went nope.

The rest that follows is my contribution:

I've been wanting to write a post about this for a couple of days but have struggled with words. However:

Tacit support or agreement for his sexism, as part of bonding through humour

is actually the exact phrase I was looking for.

At the weekend I was crewing an event. At one point I was chatting with another member of crew when another guy came up and joined in. I can't even remember the original thing we were joking about but the following exchange happened:

guy 1: I would totally do X thing.
guy 2: I would have to rape you to death if you did that.
me: Oi, less of that.
Guy 1: I don't mind
Guy 2: I didn't mean it
Me: Well I mind and I don't want to hear that kind of shit from anyone.

The two skulk off.

And it really bothered me. Because yes, I know that Guy 2 didn't actually mean it. It was clear it wasn't an actual threat of genuine sexual violence toward Guy 1.

 It was however, a joke about horrific sexual violence that actually happens in our society and that statistically  happens to minority groups (including women, trans people, non-binary people, disabled people - women in particular -, gay men, ace people, bi people and lesbians) far more frequently that to straight white cis guys like them. It is something that is statistically more likely to happen to me as a visible member of more than one of those minority groups, than to them.

So while it isn't those two guys seeking tacit support for sexism, it is those two guys seeking and expressing tacit support for a culture that includes the violent rape of minorities and bonding over that through humour.

And it is gross.

It immediately made me feel less safe around them. Not threatened, but certainly less confident that I could count on them to be problem free, people I would be happy to be left alone with or depend on in an emergency.

That's why sexist jokes are bad. That's why rape jokes are bad.

Because they seek tacit support and agreement for sexism or abuse as part of bonding through humour. 

I'm not fine with it. You shouldn't be either.

Sunday, 29 April 2018

Ticks, Lyme Disease and LARP

Ticks are found anywhere there are animals, especially grazing animals and those that live in woodland undergrowth.
This is important information if you are a LARPer as many of our games take place on land that is perfect habitat for ticks and the animals they live on. If you spend anytime outdoors in these sort of places you should be aware of what ticks look like and learn the early symptoms of Lyme Disease.
photograph of the back of a child's neck with the hair pushed aside to show a small dark lump embedded in the skin at the hairline. This is an embedded tick.

photograph close up of a person's finger tip. There are four ticks arranged from smallest to largest. The smallest is a fraction of a millimetre. The largest is ~3 millimetres long.  
Look out for ticks
Check your body over each day (before bed or when dressing) for tick bites. Tics usually latch on to feed so run your hands over areas you can’t see clearly or get somebody to help. Look out for bites with dark spots in the middle or small hard lumps - this is the attached tick.
If you find a tick still attached you need to remove it as soon as possible using a safe method. The best method is to use a pair of tweezers or special tick tool to gently grab the tick as close to the skin as possible and firmly pull up and out. 
Other methods such as smothering with vaseline or burning off are not as reliable and can leave you with part of the tick still attached or feeding for longer than you want.
three panel illustration from Kid's Health. Panel 1 shows how to grasp a tick with tweesers for removal. Panel 2 shows cleaning and checking the bite area. Panel 3 shows saving the tick in a ziplock bag for later testing.
Once removed wash the bite and then keep a very close eye on your general health.
The Bullseye Rash
Look out for a bullseye rash as pictured below. 
close up photograph of a person's thigh showing a large circular red rash with faint "bullseye" markings

Large poster from Lyme Disease Association showing a number of different Lyme rashes both typical and atypical.
If you develop a rash even if you didn’t see the tick or know you were bitten get to a GP as soon as you can. This isn’t an A&E (ER) thing but you do want medical attention sooner rather than later. It can take up to 2 weeks for the rash to appear. This rash is an early symptom of Lyme Disease which is a bacterial infection spread by ticks. 

Symptoms to be aware of

If you know you were bitten by a tick or suspect there is a chance you were (i.e. you have a bite but don’t know what insect did it) and start to develop severe flu-like symptoms then go to your GP as soon as you can and tell them you had an insect bite.
Severe flu-like symptoms include:
  • extreme fatigue
  • muscle and joint aches
  • dizziness or vertigo
  • tender glands esp at the neck
  • general feeling of unwell
  • you generally will NOT develop a runny nose or cough
While the rash is a classic symptom of Lyme Disease it only appears in around 50% of cases. Generally if you have a rash or other indicative symptoms your doctor will give you a prescription for antibiotics. This is usually a two to three week course of something like doxycycline. 
With an initial course of antibiotics taken within a few weeks of infection Lyme Disease is usually completely treated and cured, and you will make a full recovery. 
Untreated Lyme can have long term affects on your health and can be serious however by knowing what to look for you can get treated early and be fine. 

Other preventative measures:

Insect repellents - most insect repellent will have some effect against ticks but those containing Icaridin/Picaridin/Saltidin/Bayrepel/Piperidine or PMD/Citriodiol/ Lemon eucalyptus /menthoglycol are most effective. Remember you need to reapply throughout the day, especially if you wash or get rained on.
Clothing - ideally long sleeves and trousers that are tucked in to sock will keep ticks off of you. They can sometimes get inside cuffs and collars though to do be careful to check.
A note for LARPers- all players and crew who take place in games outdoors should be aware of this information. It’s not just combat characters who go crashing through hedges that are at risk. I got bitten at a game in October 2011 playing a non-com who was hiding. The first picture of a bullseye rash comes from a person who was bitten two weeks ago while running a game.

Why do I make these PSAs?

Now for my personal story and why I always link LARP and Lyme. As I mentioned I was bitten at a LARP game. The game was called Winter in the Willows and had us playing animal characters based on the book Wind in the Willows. I was playing a hedgehog. 
During the game we were approached by a pair of otters who were part of an evil cult. These otters radiated a mass fear effect causing all characters within a certain radius to react with terrible fear. Most characters chose to flee. However, me being a hedgehog did what hedgehogs do best. I curled into a ball and rolled into the underbush, quivering with fear, to hide. I didn't leave until the otters were gone and a trusted IC friend came and got me. Excellent roleplay. Very effective.
That evening I had a sore spot on my shoulder. I occasionally get acne or spots on my shoulders and though nothing of it, just rubbed it a bit and carried on with things. Once home from the game I still had the sore spot on my shoulder and could feel a little lump. Because of where it was I couldn't see it. I assumed it was the head of the spot or it had gone a little crusty or scabby. Gross I know but I think we've all experienced spots like that. I knocked the "scab" off and cleaned it and that was it. 
Within a week I started to get ill. I was exhausted, my body was aching, I was getting dizzy spells and my glands were tender. I assumed a bad cold or "post LARP lurgy" - it's not uncommon to pick up a bug at a LARP event after all. But I didn't get better. 
Instead it got worse, but never turned into flu. After two months of this I finally went to a doctor. I was told it was post viral fatigue and I had probably just caught a bug. I was tested for Epstein-barr virus just to be sure but it was inconclusive. Another month passed with no improvement and fatigue and pain that was causing me to miss work. That's when the real testing began. 
Over the next six weeks I had countless blood draws for testing and, thanks to my job at the time being veterinary science, we tested for pretty much everything usual and unusual and down right rare. 
I got a positive diagnosis of Lyme Disease in May, the day before my birthday. That was 6 months after I first got ill. 
I won't go in to the whole story of treatment and doctors because it is lengthy and a bit dull. But suffice to say, 6 months is too late to be starting with a basic course of doxycycline. I'm still ill 6 years later. That doesn't happen to everybody, but really you need to catch and treat it early. 
Don't be like me. Know about ticks and Lyme Disease and look after yourself. 

Sunday, 22 April 2018

Sunday Short: Running the gauntlet of a benefits appeal

Screen shot of a tumblr post. Transcript below.
Transcript:
[theconcealedweapon] Some people can lift 200 pounds. But if they carries it everywhere they want for an entire day without ever putting is down, they'd severely tear their muscles and cause permanent damage to their body.
Some people can enter a 140F car in the summer to get something out of the car. But if they stayed in the car, they'd die from the heat.
Some people can hold their breath underwater for 30 second. But if they tried to go scuba diving without the necessary gear, they'd drown.
Clearly, someone doing for a short period of time does not automatically mean that they can do it indefinitely with no problem.
So why do people assume that if someone can walk for a few seconds, they don't need a wheelchair?

[filthybaguette] HOOOOOOO SHIT THERE'S THE TRUTH

[Skeletonmug] THIS THIS THIS
it goes further that wheelchair users too.
It's a very important issue with people who can't work "normal" jobs due to chronic pain and chronic fatigue.
Sure I can go to a friend's house and talk and maybe play a board game for few hours. But a) I'm not doing that without incurring pain and fatigue and b) that is not the same level of exertion as working even a part time job.
Sure I can write a blog posts  some weeks but I still incur pain and fatigue and I can't do it everyday. It's not the same as working even a part time office job.
Sure I can walk to the shop and back using mm [sic] cane but I can't do it at any given time without notice and I end up with increased pain and fatigue. This is not the same as being able to walk anywhere I want whenever I want.
You, dear judgemental and biased assessor, could walk the length of Hadrian's wall in 5 days*, but lemme tell you, even if you have trained for it and even if you are fit and healthy, you will be exhausted and in pain by the end of it. But you can do it. So from that I can of course extrapolate that you can walk 84miles up and down literal mountains all the time whenever you want, one after another with no rest and of course you'll be fine and the pain and fatigue will be trivial and [not] eventually prohibitive?
No? Then you can't decide that because I can walk to the shops and back using my stick and incurring pain and fatigue that that means I am fit to work a regular job or have zero mobility issues.
*I have actually done this before I got stick. It was way tougher than I thought. 

This is a fairly old post now but it popped up again today and it couldn't be better timed.

This post is going to be unusually candid and personal but I think it's important to share my experience with applying for PIP (Personal Independence Payment).

The quick rundown of the timeline is as follows:

  • October 2016 - receive a letter from the Department of Work and Pensions stating that I will be being moved from my Disability Living Allowance on to PIP and need to apply for PIP by November 2016.
  • November 2016 - Face to Face assessment with DWP assessor
  • December 2016 - receive a letter from the DWP saying that I have been awarded the standard rate for mobility at £21.61. This is over a 75% decrease in what I was receiving in DLA and a demotion in grade.
  • December 2017 - Request documents so I can submit what is known as a "mandatory reconsideration".
  • January 2017 - Date for mandatory reconsideration passes without me receiving the requested paperwork. 
  • January 2017 - finally receive paperwork
  • February 2017 - Submit mandatory reconsideration 
  • February 2017 - Receive refusal of mandatory reconsideration.
  • March 2017 - Submit formal request for appeal and tribunal
  • February 2018 - Receive letter with date of tribunal and option for submitting supplemental information. 
  • April 2018 - Appeals Tribunal held. Decision given. Awarded an increase to include Standard Rate Care. This is a 100% increase from the original award.

The reason this is being paired with the above tumblr post is that so much of the application, assessment, reconsideration and tribunal is about repeatedly reminding and convincing complete strangers that being able to do one thing does not mean that I can do everything all the time.

There is a key phrase in the guidance and scoring criteria for PIP and other disability related benefits: "reasonably, reliably and repeatedly".
What this basically means is can you do it with reasonable levels of pain, discomfort or distress, no more than an able bodied person would be expected to endure; that they can be expected to reliably perform the task in an expected manner; that they can repeat the task in a reasonable time frame.

Despite this being specifically in the guidance for PIP applicants, it seems that any assessors and professionals involved in decision making don't keep this in mind or have a poor understanding of what it actually means. There is also a tendency for people to think in very discrete terms and not consider that doing thing A will also have an impact on your ability to do things B,C and D. It's not just about doing thing A again and again.
On top of that it's recognising that things A, B, C, and D may have different stresses on the system or difficulties associated with them. Sometimes it helps to think about it as a game of Tetris with really big awkwardly shaped blocks. Each day you may only be able to fit in one big awkward shaped block. Or you can fit a B block and a C block but that's it, not other. Of course you also need to consider the long term impact of activities or situations. Symptoms don't stop and our bodies don't resent at midnight ready for a fresh day.

This is why my PIP appeal was brutal. Because I have to repeatedly, with every activity, from cooking a simple meal to walking to a bus stop remind them that even if I can do it once I can't do it again and again. Even if I said I can start cooking a meal, I can't necessarily finish cooking a meal or do anything after cooking a meal.
Additionally if it can only be done with pain, fatigue, distress, or confusion then it is not being done in a reasonable fashion.
Even communication. Yes I might be communicating with you now but can I do it reasonably, reliably and repeatedly.

It is ridiculously exhausting to have to do this again and again. It's not just the frustration of repeating oneself, it is the pain and distress of having to justify your experience to people who are absolutely failing to grasp what you are telling them.

Disabled and chronically ill people really need able bodied people to actually consider and appreciate the ease with which they do things every day and how that is not the experience of disabled people. More than that we need able bodied people to listen to disabled people and respect and understand that we are not exaggerating. We are trying to be as open and frank about our experiences as we can. It we say we can't do something it's because we can't. It doesn't matter if we did it yesterday or we did something that you judge to be similar. If we say we can't do it or we can not do it reasonably, reliably and repeatedly then we can't.

If more people understood this then people wouldn't have to go through 16 months of intrusive, distressing and at times physically and mentally demanding scrutiny.

Sunday, 15 April 2018

Sunday Short - People>Profit

This post first appeared on Tumblr on Thursday 12th of April [content warning for some indirect racism and colonialism]



[Three screen grabs of a tumblr comment thread. transcripts below]

First picture:
[Jennykilledmyfamily] To my understanding sweatshops are part of the industrial development process of a developing country. like how the united states had child labour and (pretty much) sweatshops during the industrial revolution. so it's awful in the short term but creates benefits in the long term.
[marxistbarbie] what kind of late stage capitalist dystopia are you on to say something like this!
[Jennykilledmyfamily] The kind that puts food on my plate every day and night so I don't have to stand in line for a loaf of bread my whole life
[Sophrosynic] ew
[sophrosynic] TFW you try to defend capitalism but accidentally admit that capitalism is a system that literally cannot function without exploiting people in the most morally reprehensible way possible just so that a small group of people don't have to stand in a bread line
[tomatomutato] So what would people in China be doing if we got rid of sweatshops? Would they all become software developers? They'd likely be doing subsistence farming. They wouldn't live in poverty like they do now, true but they'd starve to death.
I say this as somebody who is not in favour of the status quo with 80% of wealth earned going to the top 1%. I've just heard some arguments against it that I hadn't considered before.

second picture:
[justsomeantifas] congratulations on missing the point, big time.
[arcaneinteractions] Wait how the fuck did you get from "subsistence farming" to "starving to death"? Like, China prior to the entry of the agents of capitalism wasn't exactly some barren hellscape waiting for western intervention to save its starving people.
[Tomatomutato] "Wait how the fuck did you get from "subsistence farming" to "starving to death"? " Pretty easily, actually. If you are making just enough to feed you and your family you are pretty much screwed if anyone gets sick or so there's a dry season and you can't farm.
[arcaneinteractions] aw man i am going to knock your socks off by inventing the grain silo
[Tomatomutato] So that implies that you are growing enough to have excess to store it. Which is great if that's the case but that's a different scenario. I don't want to mince words here but what exactly is it you're saying should happen? Hypothetically, we shut down all factories that could be described as a sweatshop, what happens next?
Are there any other jobs the citizens could do to make a living? Is farming and growing your own food and building your own grain silo etc something you are saying should actually happen in China or are you just being rhetorical? 
Because many of the factory workers are people who left the countryside to move into the city because of extreme poverty. If farming was viable and preferable to working in a sweatshop more people would do it.
[justsomeantifas] at first I thought this was funny then i just got sad because I honestly can't imagine being this unimaginative or this misinformed or this resistant to actually learning shit. lol
[geekycubil] Where does @tomatomutato think all the people currently working in factories are getting their food from? More people working in factories means fewer people working on farms. Since the factory workers aren't currently starving according to tomatomutato this means the reduced number of farmers are already producing enough food for them. If these people suddenly stopped working in factories the food supply wouldn't be affected. If they all started farming, all other things being equal, the food supply would reasonably be expected to go up. It's a myth that increasing safety decreases jobs, in general, but let's pick something like reasonable overtime rules. Wouldn't reducing the number of hours a given person works create more jobs since more jobs would be needed to reach the same number of labor-hours?

Third picture
[anfem-cripplepunk] I can't believe people are seriously justifying slave and child labour and sweat-shops. People in Asia don't deserve to suffer for "first world/developed" and Western countries and their comfort, privilege and capitalism. 
So much racist, colonialist, imperialist, nationalist, xenomisic, ableist and classist bullshit wrapped up together in a nice pile of shit and tied with a bow.
Goddess fuck, we shouldn't need to debate the economics when human lives are at stake. People >profits.
And when those of y'all are busy defending capitalism no matter the cost don't suddenly pretend like you care about the plight of Chinese people, and how they'd deal with the aftermath of ending the aforementioned three [slave and child labour and sweatshops]. You're really jsut concerned with how we would deal with the aftermath.

My contribution:

[Skeletonmug] plus nobody is saying just close down those factories. What most people are saying is “hey why not pay a fucking living wage to people and regulate their working conditions.” they can keep their jobs if they want to but they don’t have to be working in dangerous conditions and earning next to nothing.

And before you say it that doesn’t mean that prices of products have o go up which will hurt other poor working people who need to buy that stuff. If they really want to, if they have an ounce of actual ethics, companies can absorb all that extra cost of production and just have a smaller profit margin. Don’t forget profit comes after wages and overheads, it’s litterally just numbers on a page. They don’t need super high profits for anything other than supporting a capitalist economy that places more value on profit than on human welfare.

And if the cost of products go up then here’s an idea for you, how about ... how about those companies that are paying their hard working staff so little that a small price increase makes buying things prohibitive ... how about hey give their staff a pay increase too. And where would the money for that come from? you guessed it, that fucking useless profit margin, or the equally fucking useless CEO bonuses and pay that is often 800% what their workers get. Maybe if they can go manage to live on less than £1000000 a year then some of their staff can live on more than £13000 and not be in poverty. Wouldn’t that be nice.

See how we’ve managed to reduce sweatshops and poverty and dangerous working practices? It was that easy. And that’s still working in a capitalist structure, that still abiding by he rules of business ownership and profit and wages material consumption and CEOs making big salaries.

Now me personally I’d go a hell of a lot further than that and mandate a universal basic income for people so that they aren’t forced into working in horrendous conditions and have the power to be able to demand better working conditions because they know they won’t starve. But you know, that’s just me.

also for the love of kittens can we please stop with this othering of an entire continent (Asia) and country (China) and stop treating them like some parochial slightly stupid cousins. There are actually some super developed economies in Asia as well as incredibly complex socioeconomic and political histories which make it not a straightforward issue and makes comparison to countries like the USA meaningless. Also we need to stop thinking that terrible working conditions and virtual slave labour only happen in "foreign places" it happens in the US and the UK and probably other "developed" countries too.


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Sunday, 8 April 2018

Sunday Short - Non Specific Accessibility Aids



This post first appeared on Tumblr earlier this week. I was initially hesitant about posting this because that would be three disability Sunday Shorts in a row. But I decided to go for it because it's an important topic


For ridiculous reasons I have been without a mobile phone for two months now which is infuriating.

I haven’t been able to afford to buy a replacement and I have lived in hope that the place I sent it to get fixed would actually return it. That’s a whole other story though.

The thing I don’t think people realise is actually how disabling this is for some people. I know there are all sorts of stereotypes and prejudice about The Youth and Their Addiction to Screens which largely is bullshit. The truth of the matter is that for modern life, especially for people brought up with the tech, smart phones are incredibly useful. They can keep you in touch with people, you can conduct web searches, you can easily check your bank balance when you are out, you can check Google Maps for directions, use it as a train ticket and so so much more.

For pretty much anybody of any age ho uses a smart phone regularly, being without one for a protracted period of time is an inconvenience at best. We can’t deny how useful they are.

But I want you to consider that usefulness and expand it a bit further.

I want you to consider it as an accessibility aid for disabled people.

Consider somebody who has sevee anxiety or autism and who struggles being out, especially in busy places. Their smart phone has apps that can help to calm or distract them, it has music, audiobooks, meditations or white noise to drown out or distract from excessive stimuli. It can help communication if you struggle talking to other or can bypass stressful communication altogether for example by giving you directions instead of having to ask a stranger. Most importantly for many it can allow you to contact somebody you know and trust either to come and pick you up/help you or just to keep you calm and centred while you manage yourself.

Consider the person with ME who gets struck with excess fatigue or pain while out. They can use their phone to look for the closest taxi rank, bus stop or to order a taxi because they cant walk anymore and aren’t safe to drive. They can use apps or google street vie and similar to find the nearest bench to sit. They can use their phone to communicate to people f the fatigue effects their speech. They can use apps to check when they last took meds and when it’s safe to take another dose. Again, they can call for support, help and guidance when they are so exhausted they can’t think clearly.

Consider the person who is partially sighted who can use apps to magnify text on labels and packages or to read out loud signs. They can have spoken directions to navigate a busy town centre. They can use the bus services app to get a ticket so they don’t have to try and see the coins and ticket machine when travelling.

There are so many different ways a smart phone can help disabled people access the world around them. They are useful for pretty much everybody but they can be the thing that makes the world actually accessible to others. But a smart phone isn’t considered an access aid. You’ll never get government funding for a smart phone no matter how useful it is to a person.

There are so many other everyday objects I could have used as an example - a hand blender, a microwave, a laptop or tablet, a “fancy” one cup kettle- but also a pre booked seat on a train, first class on a plane (for the leg room amongst other things), taxis, specific housing.

We have to stop seeing access aids as medical devices that are prescribed and start recognising that what might be a convenience to you, an able bodied person is actually a major help to a disabled person. We need to do this to reduce disableism, increase accessibility and to realise that things like being without a phone isn’t always just a minor annoyance.

This is what is often called a “disability tax” - the extra costs that disabled people need to pay in order to have normal access and a normal standard of living. What is a non-essential item or a perk to an able bodied person is virtually a necessity to a disabled person.