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.
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.
(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!)
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.
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.
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!
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.
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!
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.
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!
Whilst the Covid-19 pandemic is further erasing our rights and quality of life, I want to focus here on the pre-coronavirus situation.
The United Nations report drew attention to the high levels of poverty experienced by disabled people and the insufficient resources available to support disabled people to live independently in the community. Further, it found that:
“Most of the breaches – which were all under articles 19 (independent living), article 27 (work and employment) and article 28 (adequate standard of living and social protection) of the convention – were caused by policies introduced by Conservative ministers at the Department for Work and Pensions (DWP) between 2010 and 2015.” – Disability News Service
Austerity and Cuts
“From its election as part of a coalition government in 2010, the British Conservative Party under David Cameron oversaw a programme of cuts not seen since the 1920s.” – Frances Ryan, Crippled
In 2013, the Centre for Welfare Reform established that disabled people would feel the government spending cuts more significantly than non disabled people:
“The cuts are not fair. They target the very groups that a decent society would protect: People in poverty (1 in 5 of us) bear 39% of all the cuts Disabled people (1 in 13 of us) bear 29% of all the cuts People with severe disabilities (1 in 50 of us) bear 15% of all the cuts”
Disabled people as lazy benefit scroungers
In order to get away with this unequal allocation of the burden, it was necessary to cast those affected as liars and cheats and lazy benefit scroungers. The government vilified us, cast us as fakers and frauds. We have been treated with contempt, suspicion and generally treated as less than human.
There has been an increase in hate crimes, fuelled by resentment as the wider public are led to believe that disabled people are handed everything on a silver platter. The government has been emphasising the idea of disabled people as lazy, wanting to get something from nothing and being a burden. People are treated cruelly and it’s often assumed we are faking or exaggerating our disability for the benefits, the blue badge and so on. You feel the need to prove, over and over again – to the government and the public – that you really are in pain or really are disabled or really do warrant that blue badge or seat on the bus.
“The level of scrutiny all benefits claimants feel under is so brutal that it is no surprise that supermarket giant Sainsbury’s has a policy to share CCTV “where we are asked to do so by a public or regulatory authority such as the police or the Department for Work and Pensions”. Gym memberships, airport footage and surveillance video from public buildings are now used to build cases against claimants, with posts from social media used to suggest people are lying about their disabilities. More and more private companies are being asked to send in footage. The atmosphere is one of pervasive suspicion, fuelled by TV programmes such as Benefits Street… The number of benefits investigators has increased substantially in recent years, from 2,600 to 3,700 from 2015 to 2016, while only 700 people investigate the super-rich. This is despite the fact benefits fraud costs the government around £1.3bn a year compared to around £34bn for tax evasion.” – The Guardian
The reality of benefits
In reality however, being disabled is hard work, frustrating and expensive. It costs more to be disabled, both financially and emotionally.
Then there is the idea that we are all faking our disabilities which comes with a high emotional toll and doesn’t have any statistics to back up the idea. It was estimated that Disability Living Allowance had a fraud rate of just 0.5% and yet the government still felt it necessary to replace it with Personal Independence Payment.
And if that emotional toll is not enough, living on benefits is difficult. If you receive Employment and Support Allowance you could be getting as little as £70 a week. If you get ‘lucky’ and receive £100, that works out to be the equivalent of being paid £2.70 per hour for a 37 hour week. It’s £14 a day. To cover groceries, utility bills, any rent or mortgage payments, phone bills, transport costs and more.
In 2018, Joseph Rowntree Foundation found over a third of all adults living in poverty are disabled. Scope, in 2017 found one in 5 disabled people were living in food poverty; routinely skipping meals and missing vital nutrients which in turn is likely to have health consequences of its own…
Measures introduced since 2010 include the bedroom tax, cuts to council tax support, changes to the benefits system which reduce how much disabled people receive as well as the number of people eligible and the introduction of Universal Credit.
“As of 2017, new recipients of one category of ESA have seen the benefit shrink by almost a third – down to seventy-three pounds a week – with half a million people who are too disabled or sick to work set to lose over £1,500 a year each.” – Frances Ryan
A key way the government was planning on saving money was by reducing the number of people getting disability benefits, meaning they went into the changes with targets. Specifically, ministers were estimating that 500,000 fewer sick and disabled working age people would be eligible. This of course meant tightening up the criteria and refusing people who were eligible. So many denied applications have been approved at appeal – 71% of welfare benefit appeals overall had the initial decision revised in favour of the claimant which reflects shockingly on the quality of the initial assessment and decision making process. It’s almost as though they are hoping people don’t have the energy to appeal…
Another way the government is able to save money is through sanctions; withholding benefits because the claimant has done something ‘wrong’ such as not turning up for a review because they were in hospital.
“Between 2013 and 2014, sanctions against disabled and chronically ill people rose by 580 per cent.” – Ryan
Going through the benefits system has an impact on both physical and mental health and at the same time as the government is making it harder to get benefits, it is also cutting the support available to help disabled people in the workplace. Access to Work is a scheme which pays for things like equipment, computer software and interpreters to help disabled people at work. Cutting the funds available mean less work opportunities and hence less income and more reliance on benefits.
Social care is yet another way that disabled people have been hit by cuts. Billions of pounds of money has been slashed since 2010, money that helps disabled adults as well as older people to live at home.
So often this is portrayed as being about older people but disabled adults, including disabled adults in work, are a significant chunk of social care packages. This means that money spent on social care helps to keep people in employment – if you haven’t got the help you need to get out of bed or get dressed, then you aren’t going to be able to go to work.
A study by Scope in 2015 found that 8 out of 10 disabled people don’t have enough social care hours. The reality of this is people waiting hours to go to the toilet, not getting washed or changed daily and not being able to cook or eat. If you do have the hours you need, they may well not be at a time you need. I was regularly put to bed at 5.30pm, despite being in my 20s.
Funding for social care is mostly discussed in terms of older people being forced to sell their homes but there are many disabled adults who are forced to pay a contribution towards their care. Whilst this is couched in terms of a proportionate amount, the reality is they take any income above the amount that you would receive in benefits.
This goes beyond just being frustrating and is actually dangerous, as well as expensive. Poor housing costs the health service £600 million every year, such as falls, poor mental health because of the housing situation, people being unable to get to the bathroom to shower etc. It also impacts on the health and wellbeing of anyone carrying out a caring role, whether paid or voluntary. I’m thinking of things like my carers having to lift my very heavy electric wheelchair up a step to get it into my old flat. There was no ability to add a ramp and they could easily have hurt themselves doing it.
Not having accessible homes also means disabled people may be unable to leave to go to work. If I hadn’t had care for other reasons, I wouldn’t have been able to leave my flat on my own and wouldn’t have been able to go to work.
But even if you have a home that you can get into, you likely need additional adaptations and right now, there can be a wait of over two years for help with that…
“67% of councils report disabled people not having crucial home adaptations completed within the 12-month deadline. 23% of councils report disabled people waiting over two years for completion of works.” – Leonard Cheshire
There are of course many other issues affecting disabled people in Britain today that I haven’t touched done; hate crime, intersectionality with race and gender, public transport, access to education and so on. I will be revisiting the additional issues that face disabled women in another post but in the meantime, here are some useful links:
Nothing, you have nothing in common with them, why would you say anything at all?
Remember that all disabled people are childlike and innocent so please, whatever you do, don’t talk to them using long words or difficult concepts. Ideally, talk to their parent or carer.
If you have to say something to the disabled person themselves, then it’s only polite to note the valuable contribution they are making to society by being brave enough to leave their home. It’s good manners to say how inspired you are by them, otherwise they may feel less motivated to exist.
Obviously certain topics are off the table – the disabled person can’t possibly work, probably isn’t in education and won’t be in a relationship. This does make it harder to know what to talk about but there are some phrases you can use to fall back on if you get stuck.
If the person uses a wheelchair or mobility aid; Have you got a license for that? Watch the speed limit! You’re far too young to need a blue badge/wheelchair/walker. It’s a shame about the wheelchair, you’d be quite pretty otherwise.
If they are blind, you might want to ask them about how much they can see, if anything. If they are deaf, talk realllllly loudly and realllllly slowly to help them understand. Actually, that’s a good rule for talking to anyone with a disability, as is the use of baby talk.
A good generic question for all occasions is what happened to you or what’s wrong with you?
You might be able to offer some advice such as the miracles of a juice diet, or you may want to suggest they bring god into their life. Mindfulness, going vegan and exercise are other good tips that the disabled person probably isn’t aware of, after all, they are disabled…
You can always offer to pray for them and, if you’re feeling moved, you can kneel down right then and there and pray.
If you’ve run through all of the stock suggestions and are still stuck talking to a disabled person, you can always ask to have a go with any equipment they might have – you’ve lucked out if it’s an electric wheelchair!
As you’re leaving, make sure to tell the disabled person you hope they get better soon…
Obviously, before I get any nasty comments, this is all tongue in cheek! I am a disabled person and I have experienced most of these personally…
I have a PEG feeding tube and it has given me my life back, but it isn’t problem free. I’ve written about tips before but of course I’m always learning new things so I wanted to do another post.
You can end up with a lot of equipment – bags of feed and water, syringes, tubing – and you may not want to pile boxes up in the corner of your bedroom or lounge…
I have a set of beautiful wooden drawers that store my smaller bits and pieces such as the syringes and spare parts. In a kitchen cupboard we store tubing and a week or so of feed and water bags, the rest of which we keep on a bookcase and in the hall cupboard. I like to have nice storage as it makes my flat feel less medical but talking of which…
We have two peg baskets, one for morning medication and one for evening medication, the points in the day when I have most medication.
I discussed how I use a pestle and mortar, tea strainer and medicine pots in my previous post so I won’t expain that again. One addition is a small tea tray that we use to carry the prepared medication from the kitchen to wherever I am in the flat. An alteration we have made is that when we leave the house, we no longer use the soup cups to take flush water as they started to leak a lot. Now we use small kids drink bottle, if you’re looking to find something, think about having a wide neck so that you can get to the water more easily.
Bits and bobs
Since my last post, my PEG has been changed and has a little more discharge than it used to so I have started using tubie pads from etsy. I also forgot to mention the value of pliers! Every so often the giving tubes get stuck to the PEG and pliers will come to your rescue. Make sure you take them with you when you go away as that will certainly be the time it gets stuck.
Having had some leaks overnight, I’m grateful that I have an easy to wash rug beside my bed.
If you are prone to hospital trips then a go bag should include feed and ephemera, don’t assume the hospital will have your feed in stock or be able to get it easily. Also, take medication with you.
Bags and more
I have seen some tubies using rucksacks designed for hydration as they often have an internal loop to attach the feed bag to and a channel for the tubing to get from inside to outside. I’m wondering if the headphone port on many bags could also be used.
I have also come across, but not tried, the free arm which looks like it could be used to attach a feed set up to a wheelchair, table or other structure.
I have recently had to extend the amount of time I am hooked up to the pump and in lockdown that has been fine but once I re-enter the world, we are going to need a way of taking the pump and water out too.
As I already have a specific wheelchair bag that fits all my stuff in, I didn’t want to go down the rucksack route. I do also have a bag designed for the pump and feed but it is boring and black, and the way its designed means the tube kinks a lot and causes errors.
So, after a bit of thought and experimenting, I discovered that the pump attaches onto a tripod. Specifically, a Joby Gorillapod.
The longer term plan is to get a caribiner hook to attach the water/feed bag, the photo was just us trialling the idea.
Over on instagram I’ve been seeing a lot of posts about Disability Pride Month and from what I can tell, it came out of America and July was chosen as it was the month the American’s with Disabilities Act was passed.
As such, I thought I would make a more conscious effort to focus on disability this month. Anyone who has looked at my blog for long will realise that I cover a number of topics, it’s all a bit of a mish mash and there is no real schedule about when I post and what I post about!
I have a few ideas for some posts but in the meantime, have a dig into some of the posts you might have missed…
If you have a topic about disability that you’d like me to look at, please leave a message in the comments. Similarly, if you have a question you’d like to ask me about disability, this month is your opportunity. Use the comments or email me if you’d prefer. This is your chance to ask me anything. I am not promising I will answer everything but I am happy to be asked!