Sexual health testing and disabilities

I’ve written before about some of the barriers that disabled people face when wanting to check on their sexual health. Whether it’s inaccessible buildings, unsupportive care teams or clinics that don’t have hoists, there’s a lot of barriers.

Well, Enhance the UK have paired up with SH:24 to provide 900 FREE test kits to disabled people.

It’s a simple process to sign up, they take some basic information from you and then send you out the kit in the post. Mine arrived in discreet packaging so could be kept private – my carers always open my post for me by default but I’m also very open with them so wasn’t concerned.

Inside mine was a vaginal swab and a blood test. I’m going to say that what you get depends on who you are etc!

I have severe vaginismus so was somewhat concerned about the swab – it has to be inserted 5cm into your vagina for 15 seconds. But, whilst I wouldn’t say it was comfortable, it was fairly managable for me. For people who can’t reach down there themselves, I’d say if you have help putting in a tampon, this will be fine. If you are sexually active, ask your partner to do it if they can.

For the blood test, you get three finger pricks and a small vial to drip your blood into. My body doesn’t like giving blood so I made sure I was hydrated and warm before hand, both things that help with blood flow and hence blood giving.

Top tip: Place your finger in a warm cup of water for a while first to get the blood flowing!

Once you’ve done the tests, you pop them in the provided envelope and send it off.

After three weeks I got a reminder text that asked if I needed any help – I didn’t as I’d actually just sent my tests back but it was a nice, friendly message. I had ended up waiting a while to do my test because I was on my period. They do say you can do the swab whilst you’re on but my periods are so heavy that I didn’t want to.

Three weeks and one day, I got a text saying that my tests had been recieved and would be turned around within 72 hours. A day or so later I got another text saying it was a little delayed. But then, not long after, I got my results by text.

My test had checked for chlamydia, gonorrhoea and syphilis. The first two were negative and the third was unknown as the blood had clotted and the test couldn’t be completed. I was able to text back to request a new blood test kit.

When I signed up, one of the questions was about sexual assault or rape. As someone who has experienced historic sexual assault, I ticked the box. That evening, a few hours after I’d completed the form, I recieved a text with a link to find my nearest Sexual Assault Referral Centre for support. There was also the offer to text back and arrange a time for a phone call.

Throughout the process, I found it easy, friendly and accessible. It was simple and hassle free and felt like I was being supported. I would definitely recommend it.

Being published!

When I was little I used to make my own newspapers and would go round trying to interview people and write articles. There was the attempt to implement a newspaper in primary school and another attempt to do the same when I was a Guide. None of this stuck but I loved the writing involved.

This makes it very exciting that I was recently published in the local newspaper!

(That’s all for now – writing the column, doing York Disability Rights Forum, staying alive during a pandemic and the darkening days of Winter’s approach are all taking a lot out of me. But I miss my blog and I do hope to get back to it soon!)

An untitled poem about autumn

Her Midas touch
turns all to gold:
                the light
                the leaves
                the conker’s sheen.
All honeyed under rich veneer.

Palette of pumpkin spice
               and kicking leaves
               in smoky air.
A mask.

Cracks in the façade reveal
threads of decay,
and Autumn’s truth.

She’s Winter’s catalyst.
The cog that turns
warmth cold,
bright dark,
hope harsh.

Sets the stage for
Winter’s empty monologue.

Gardening

As of a few weeks ago, the couple I share a yard with finally ‘let’ me have half the flower bed. Admittedly, I am entitled to half of it but they aren’t the best neighbours and if it’s taken them four years to finally accept me then I’m going to take it.

Small flower bed filled with herb robert

It was a mess. Heavily covered in Herb Robert and a massive bramble.

Rosebay Willowherb fallen over and taking up a lot of space

And Rosebay Willowherb, also known as Fireweed, had fallen over on the paving slabs.

But I also knew that there are some welsh poppies and daffodils hidden away somewhere and, as we removed the Herb Robert, we discovered a buddleja! I love their purple flowers and they are so great for attracting butterflies so that was exciting.

I am keen that the space I have will a) be easy to maintain as I do have a disability and most of my carers don’t really garden and b) wildlife friendly. I already had one bird feeder attached to the fence so I got myself a second.

Flowerbed, mostly filled with soil and a couple of plants. Next to it is a tall fence with two bird feeders attached.

Sticking with the eco-friendly theme, I wanted to reuse materials as much as possible and led me to The Reclaimed Company which is also based just outside York so less fuel use as well! I chose myself some green welsh slate, some roof tiles and a chimney pot.

Welsh slate leaning against a brick wall

This beautiful slate was laid on the soil so that it’s easier to reach the bird feeders, especially in winter when it’ll be all muddy.

The Rosebay Willowherb and Buddleja have been staked so they grow vertically not horizontally! A fantastic sage plant has been added, along with a fern and a couple of hostas.

I have bulbs that will go in over the next couple of weeks – more daffodils, snowdrops and crocuses.

Corner of a flower bed with a buddleja and rosebay willowherb and a chimney pot turned into a bird feeder.

The chinmney pot has become the base of a bird bath and it was very exciting to see the birds discover it. I have also laid some roof tiles on the soil to make stepping stones to the bird bath so it’s easier to clean. As I have to rely on carers for some of these jobs, I want to make it as easy for them as possible.

I’m looking forward to finally having a bit of garden space and am so glad I hung onto my garden tools for all these years!

Sparrows

There’s a chi chi chi back and forth between me and her – my nestling – and our parents.  Within a chaos of other marco polo calls, we hear our own, our kin.  We call as easy as we breathe, and we hear it just as clearly.  It’s as though there is a thread, running from my heart, to my parents, and their returning calls are like a gentle tug on it.

Male sparrow on the fence next to a fledgling. A second fledgling is skipping along the top of the fence.

The line of the fence top is perfect for testing the not yet entirely reliable hops and skips and jumps.  We chase each other playfully in the sun. 

Freeze!

I quickly tilt my head, eye to the sky.  Is this shadow a friend, a foe, or apathetic to my existence? 

I crouch. Breast pressed into the wood.

Then I rise in relief and shake out my feathers.  My parents aren’t concerned, not an enemy then.


I extend my wings in a stretch, scratch a claw to my neck and fly down to the ground.  Pausing on landing, I look around with wary curiosity, the way I was taught.  Eyes alert, head tilting, twisting.

Underclaw, the soil is soft and flattened leaves criss cross each other, weaving textures.

In the shelter of the fence, amongst the tall stems, I peck at scraps, dropped from the wire enclosure that I’ve yet to figure out.  It’s a mystery to me how you stick the landing on the thin metal branch and then perch with the perfect balance and then you have to lean and peck.

Later, back on the fence, the two of us wiggle impatiently.  My tiny claws dig into the wood, like grappling hooks, and I peer over the edge to watch.  He  lands, perches, balances, leans and pecks with expertise.

As we wait, our wings flutter uncontrollably and we squeak and squark with anticipation, telling him to hurry, hurry!

And then he comes!

Male sparrow going to feed fledgling who's beak is wide open.

Our mouths are as open as beaks will allow and dad slips his into mine and leaves behind a seed.  Then it’s her turn, then mine and we hop and jump and clamour for it to be our own turn again.

Male sparrow feeds fledglings on the fence

A blackbird trills, a woodpigeon cu-coo-cus and there’s a clattering chatter of other sparrow families; chirrups, cheeps, chirps and churrs.

A pair of shadows slide across the courtyard and all the calls stop.  The caws of the black demons fill the, now empty, air. 

A few sparrows call boldly, distracting the crows away from their vulnerable chicks.  But the devilish claws are filled with something that seems more interesting than a tiny, fluff ball chick.

Later, dad lands on the fence again and we flee to his side with hopeful shrieks, to no avail.

York Disability Rights Forum and Blue Badges

You may, or may not, have noticed that things have gone a little quiet over here… That’s because I’ve been heavily involved in setting up York Disability Rights Forum and before we had even launched, we leapt into action.

There have been changes to city centre Blue Badge parking all over England as councils scramble to make their city welcoming but suitable for social distancing. In a number of city centres, on the street Blue Badge parking has been suspended and inadequate alternatives have been implemented, without consultation.

In York, the changes mean parking outside the city walls, in a car park away from the shops and using a ‘shuttle service’. At the time of the changes, the communication was poor and information about the nature of the shuttle service was scant. As such, we – York Disability Rights Forum – felt we needed to take urgent action. We were already recieving emails from other disabled people in the city about the issue and even though we hadn’t really launched, we felt this was too important not to speak up about.

We contacted the local media about our concerns, wrote to ward councillors and the relevant council staff and were invited to a zoom meeting to raise the issues we had. They boiled down to concerns about the appropriateness and accessibility of the changes, a lack of information and the language used to communicate what little was shared.

As such, I’ve been a bit busy! And also my head is filled with things about Blue Badges etc. However, I did want to write something for my blog and so Blue Badge changes it is!

I am pleased to say that there is now more information on the council website about the shuttle service, which also answers key questions about how accessible the service is and how safe it is given coronavirus is the reason it was implemented!

Further, I am meeting with someone from the council this week to talk about communication and consultation.

Everything got off to rather a hurried start with the forum but it’s exciting to see our work making a difference and I’m passionate about speaking up and advocating for the wider disability community in York.

I’m fully aware I post on a wide range of topics here and I don’t know how many of you are actually interested in York and disability together but as I said at the start, this is an issue that is happening across the country. You personally may not be affected by the changes but it’s likely you know someone who is, whether it’s a friend or a cousin or a grandparent.

Invisible Women

I have just finished reading Invisble Women by Caroline Criado Perez. It’s been on my to-read list pretty much since it was published and it didn’t disappoint.

Imagine a world where your phone is too big for your hand, where your doctor prescribes a drug that is wrong for your body, where in a car accident you are 47% more likely to be seriously injured, where every week the countless hours of work you do are not recognised or valued.

If any of this sounds familiar, chances are that you’re a woman.

In Invisible Women, we learn how the world has been built for and by men, with the male body being the default for human body. It highlights how, over and over again, women are ignored, erased and, as the title suggests, invisible. This is a systemic issue that has a significant impact on women’s lives. 

The focus taken in the book is the absense of women in data and the knock on effect that has. For example, when planning cities and transport, the standard day pattern used to inform decisions is that of a man.

Of course, taking a stereotypical man as representing the entire male population is problematic in itself, but extending the stereotypical man to represent the entire population, including women, is worse. 

Speaking in generalisations, men tend to get up, go to work in one trip, work and return home. Often this involves a 9-5 job that takes the man from a suburb area to a business zone. Sticking with generalisations, women will get up, take a child to school, continue on to work, then after work drop by a supermarket, then pop by an elderly parent’s before picking a child up from childcare and returning home. 

If you think about using public transport, the man here is taking two journeys and the woman is taking six. The man is likely finding it easier because public transport is often set up like spokes on a wheel, funelling people from outside the city centre inwards. The woman probably has to travel from spoke to spoke, rather than down the spokes and will almost certainly find it harder and more time consuming. 

Clearly, taking travel data from humans in general would help lead to decisions that are helpful for all people, eg public transport that reflects the routes people want to travel. Not considering women even inpinges on our sense of safety:

“A UK Department for Transport study highlighted the stark difference between male and female perceptions of danger, finding that 62% of women are scared walking in multistory car parks, 60% are scared waiting on train platforms, 49% are scared waiting at the bus stop, and 59% are scared walking home from a bus stop or station. the figures for men are 31%, 25%, 20% and 25%, respectively.” 
– Invisible Women

The data impact routinely impacts women, whether it’s working in offices with air conditioning set for male comfort or having your heart attack ignored because it isn’t displaying in the way that a man’s heart attack does. As a less serious example, emojis were male until 2016 and the phones we use them on, are designed with mens hands in mind. If you’ve ever noticed voice recognition seems to work better for your male friends than your female friends, then you’ve hit upon another area of male bias.

Other issues raised in Invisible Women include the contribution women make to the world in unpaid work such as looking after children, cleaning and doing chores and taking care of elderly parents and disabled relatives.

“In the UK up to 70% of all unpaid dementia carers are women, and female carers are more likely to help with bathing, dressing, using the toilet and managing incontinence. Women are more than twice as likely as men to be providing intensive on-duty care for someone twenty-four hours a day, and to have been caring for someone with dementia for more than five years.”
– Invisible Women

And when it comes to health and care, women are even impacted by the way medication is researched, with “nearly all pain studies hav[ing] been done exclusively in male mice”.  To say nothing of how rarely our pain is believed and how undertreated women’s pain is…  But that’s probably fodder for a different post… 

To sum up, go and read this book, especially if you are a women, but please read it even if you aren’t.

Disability Resources

As we approach the end of Disability Pride Month, I wanted to share some of my favourite books, youtube channels etc about disability. There are so many I would want to include but that would become an epic post so this will be more of a teaser. I’m also focusing on easier to read books rather than academic texts.

Crippled by Frances Ryan is a great book for looking at how the last 10 years of government cuts have impacted on disabled people in the UK. Another book that looks at the cuts but specifically focuses on the impact on people with learning disabilities is Austerity’s Victims by Neil Carpenter.

Scapegoat by Katharine Quarmby is another recent book which looks at disability hate crime, including where our ideas around disabled people have come from as well as real life examples of hate crimes.

A very recent publication is Disability Visability edited by Alice Wong. Each chapter is written by a different person and it’s a great way of getting to know new voices in the disability community. One very eye opening chapter is about a deaf person’s experience in prison.

Undressing Disability from Enhance the UK has chapters written by different people about disability and sex. I always find it interesting to hear from different people with different disabilities as it can help give you ideas for your own live!

Laughing at my Nightmare and Strangers Assume by Girlfriend is my Nurse, by Shane Burcaw are funny and autobiographical. Also check out the YouTube channel he runs with his fiance! It’s two years old but still one of my favourite videos they’ve done:

How to cuddle, 5 amazing tips

Whilst we’re thinking about youtube… There’s the amazing Jessica Kellgren-Fozard who is a deaf YouTuber making videos about her life with disabilities and chronic illness. She is also a lesbian and her channel covers both disability awareness and LGBTQ+ awareness with a dose of vintage fashion.

There’s also Molly Burke, a blind YouTuber and Eliza who makes videos about mental health awareness and disability awareness to try and break down stigmas.

Also on YouTube (and Netflix) is Crip Camp (and an audio described version) which gives an incredible insight into the people who shaped much of American’s recent disability history.

If you’re looking for a good representation of a disabled person, acted by a disabled person, check out Speechless. It’s sometimes on channel 4 but it’s so funny and so good that I purchased it.

Ache Magazine is “an intersectional feminist magazine exploring illness, health, bodies and pain publishing writing and art by women, trans and non-binary people.” They have three issues out already and I’ve really enjoyed reading them. So often women in particular have their pain ignored or invalidated by medical professionals and so having a space where our voices can be heard is powerful.

If you are wanting something a little more academic, a great starting point is Disability Rights and Wrongs by Tom Shakespeare. I’ve not read the revisited version but given how good the original was, I can’t imagine you’ll go wrong with it!

On my ‘to read’ list I have The War on Disabled People by Ellen Clifford and Care Work by Leah Lakshmi Piepzna-Samarasinha.

Finally, and not at all a book or film, is Kintsugi Clothing which, as you’d expect, is a clothing company and their clothes are made with disabled people in mind! I love them so much and they’ve recently hinted at making something that is feeding tube friendly!

What you don’t see

Most people see me as a strong, capable and resilient disabled woman who reacts to hurdles with humour and sarcasm.  This is evidenced by some of my more recent blog posts – what to say to a disabled person and how to act around a disabled person.  Whilst not everything included in the posts has happened to me, much of it has.  Further, my series of posts on how to be a carer are entirely based on personal experience.  I wrote these as a way of releasing my own pressure valve, but also to give non disabled people a glimpse into my world.

It’s easy to look at me and see someone who is coping admirably and who doesn’t let things get to her but that’s because when things are too much, you won’t see me.  When I am at my lowest, I won’t be going out, I won’t be socialising, I won’t be turning up at events with a smile on my face.  I just won’t be there for you to see.

Being a disabled woman in the world as it is today requires a lot of emotional energy.

If I am fighting for my basic health needs to be met, you won’t see me.  If I am fighting for a home that meets my needs, you won’t see me because I probably can’t leave the house.  If I am fighting for the care I need, you sure as hell won’t see me because I won’t have the support I need to go out.  If I am fighting for my basic rights, you won’t see me because not having them met means I can’t interact with the community. 

And it’s tiring having to fight and fighting over and over again about the same things.  Having to explain yourself over and over again.  Having to reduce who you are to a list of symptoms and things you cannot do for yourself is emotionally exhausting and degrading and does not make me want to socialise.

Assuming now that my basic rights are met, I have a home and care and my urgent health needs have been dealt with, I may now be going out.  But still I face frustration after frustration that rubs at my resolve like sandpaper. 

There’s no drop kerb.  A car parked behind my van so I can’t get out.  Someone parked in the blue badge space without a badge.  The lift is broken.  There’s no ramp.  Someone blocked the drop kerb.  An A-board is taking up the pavement. The aisles are too narrow for an electric wheelchair…

You will rarely see me get angry or frustrated about these things.  It’s not that I don’t feel that, it’s just that if I react with anger at each thing, I will ruin my day, put myself in a foul mood and impact on my mental health.  So instead you will see sarcasm and humour.  If I react to every bump or blip I face, I will be drained and I will always be angry.  And that’s just some of the physical things…

There are people and their prejudices, their attitudes and their hate to contend with…  And no, not everyone is like that, but enough are that are.  Over and over I hear the same messages:

“You’re so lucky you don’t have to work”

“You’re so lucky you get a free car”

“I couldn’t cope with what you have to”

“I couldn’t live like that”

It’s a strange mix of you’re so lucky but oh god I couldn’t have your disability… It also exposes a fundamentally problematic way of thinking that misses the amount of energy and effort it takes to move through the world as a disabled person.  It erases the additional costs we face and the latter two comments have echoes of the eugenics movement that was prominent less than 100 years ago. 

Not reacting to the ignorance of the comments and questions takes energy and so does reacting to them.  You do not see the energy I consume as I navigate a world filled with people who don’t know about disability.  You do not see the toll this takes on me because I go home before the cracks give way to crevices.

There is so much that most people do not see. 

This is just a small glimpse into the life of this disabled woman, a small peek behind the curtain, a look behind the mask.

How to act around a disabled person

Having covered what to say to a disabled person, I felt it only right to follow up with how to act around a disabled person.

Obviously, if at all possible, avoid it but if you really can’t, a good starting point is to ignore them.  You don’t want them to think you’re staring at them because they are different.

If avoiding and ignoring are out the question then read on for advice:

When it comes to things such as mobility aids, if they’re in the way, move them.  You probably have somewhere to be and can’t be held up by wheelchairs and walkers all over the place.  Also, they’re a trip hazard so really, your action is out of concern for other people.  If someone is in the wheelchair you need to move, don’t worry, they’re not really a person, not like you are, they are disabled so it’s ok to just go ahead and move it.

If you see someone with a disability struggling with something and you’re feeling generous, you could help.  For example, if a wheelchair user is having trouble getting their coat on, it’s ok to walk up behind them, grab the sleeve and help out.  Actually, even if they aren’t obviously struggling, help in any way you can think of.  If they say they’re ok and don’t need your help, ignore them, they just don’t want to feel like a burden.  Once you do help, they will be so grateful and you will have done a good thing for the poor and needy disabled person so you can walk away with a spring in your step.

Sometimes you might end up standing or sitting near a wheelchair, for example on the train, in this case you’ve struck gold!  If you have a lot of shopping or luggage, just hang it off the handles.  The same is true for things like coats.  If you’ve had a long day and are tired, go ahead and lean on the wheelchair and if you’ve got a commute ahead of you, use the headrest or arm rest to prop up your book or phone, it’ll save any wrist pain or tiredness later.

If you’re with a disabled person and you do want to interact with them, you could start with personal questions about their disability.  Follow it up with demands to test how much they can see/hear/feel, ask for a demonstration of how far their limbs bend or make them show you their adaptive equipment.

If you see someone in the street who is visually impaired, go up beside them and grab their arm so you can help guide them.  Why are they out by themselves?! How irresponsible!  Clearly they are lost and obviously they need your help, how else can they get back to their carer?

If someone has tubes or other equipment on their body, feel free to poke and prod it whilst interrogating them about what it is.  Asking questions is how you learn!  Be careful though, sometimes you might be touching a stoma or a catheter so if in doubt, point and stare instead.

You might encounter a wheelchair adapted vehicle in your travels.  These tend to have signs on them saying you need to leave 6 feet of space behind them but don’t take this too seriously.  If you’re just popping in somewhere, it’s ok to park behind them.  You’re a busy person after all and they’re disabled, they won’t have anywhere to go and won’t be in a hurry like you. 

If someone has an assistance dog, rush over and smother it with kisses and hugs, they’re such good girls and boys and they deserve all the praise!  In this case, how to act around a disabled person is easy, you don’t need to pay any attention to them, it’s all about the cute doggo!