One of the first things my stoma nurse said to me before my surgery was “you won’t be disabled but you can use disabled toilets.” And that has kind of stuck with me. I am not disabled. At least by the definition whoever decides that in my country.
The politics of disability are vast and complicated. In the last 6 months I’ve learned so much but barely scratched the surface. I want to emphasise that I’m just going to be talking from my own personal experience. I absolutely do not speak for all disabled people and you can use whatever language to describe yourself that you feel comfortable using.
So from day 1 I was aware that I am not legally or technically disabled. On the gov.uk website it says,
You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.
I guess that means pooing and farting don’t count as “normal daily activities”.
- ‘substantial’ is more than minor or trivial, eg it takes much longer than it usually would to complete a daily task like getting dressed
- ‘long-term’ means 12 months or more, eg a breathing condition that develops as a result of a lung infection
Is having an ileostomy “substantial”? It definitely takes me longer to go to the toilet and I have to go more often. I even have to set an alarm in the middle of the night because it fills up whilst I’m sleeping. So far I’ve had my stoma for 6 months but I’ll have it for years (or the rest of my life if I don’t get J-Pouch surgery).
Apparently my condition doesn’t qualify which means I don’t get disability benefits or the blue disabled parking badge thing. Which is fine, I don’t really need those things. I do get a radar key though. A radar key is a magical key of destiny that can unlock public disabled toilets. The first time I used mine it felt like I was opening the wardrobe that leads to Narnia. And it is the most satisfying thing when there’s a really long queue for the ladies loo and I just whip out my key and go straight into the disabled toilet.
The other thing I get is a medical exemption card. I get my stoma bags and other essentials through the NHS on prescription but with my card I don’t have to pay for any prescriptions. Seriously thank fuck for this. I need a lot of bags.
Here’s the thing though. This year I have felt disabled. But I don’t know if I’m allowed to use that word to describe myself. Yes, having a stoma makes it more difficult for me to go to the toilet. But having open surgery (twice) makes it difficult/impossible to do a lot more things.
I can’t run, skip, jump, walk long distances, stand up for long periods of time. This sounds like a disability to me. However, this is not permanent. I am in recovery, which I imagine will take several more months until I’m anywhere near my previous “normal”. But once I’m recovered having a stoma bag won’t stop me from running, skipping, jumping… I have seriously forgotten what it’s like to move my body around in a way that I’m not terrified of hurting it. And I love dancing.
I went to a wedding recently and it was a caleigh. It was definitely one of my lowest moments having to just sit and watch everyone else having so much fun dancing.
On top of this recently I had to pull out of an event/trip because my needs were not able to be met. I mentioned in a previous blog post that I was going to Finland to teach sex ed to kids but unfortunately I can’t go. The camp takes place on an island and the only toilets are festival portaloo style with no lights. Remember, I have to empty my stoma bag in the middle of night. Have you tried emptying a stoma bag in the dark? No thank you. Makes me sad that I might never be able to go to a festival again.
So, am I disabled? I don’t know. Do I feel disabled? Sometimes. Is my condition going to improve? Yes.
I find this topic really interesting so would love to hear your thoughts in the comments.
Photography by Alexandra Cameron.
Underwear by Panache.
Jeans by ASOS (affiliate link).
Well i’m not Disabled but in February I was diagnosed with hypothyroidism, which is a fairly common condition as far as they go. However not everybody gets all the symptoms, some people are asymptomatic for years. Now whilst my digestion and hair loss have sorted out since I started taking thyroid hormone replacement My legs and ankles have become even more sore. Hypothyroid can cause you to have sore and week limbs. I walk pretty slowly, because its sore, sometimes it feels like my legs will give way when i’m going down steps. Its pretty irritating because people just assume i’m unfit, or lazy.
I’ve also an ileostomy too for 6 years .The positives are you can poop properly for the first time in years.I have developed a large hernia which is a nuisance extremely hurtful at times.Bags leak ,up during the night to empty .Or to change sheets again as it leaked .It is a disability in my eyes as I say you have to live with it everyday and need to be near toilets everything had to be planned .An stoma is so unpredictable and you can’t control it
I had my ileostomy 27 years ago and while it was a huge relief to be able to live a normal life again. It is in my mind still a disability of sorts, some days I only have to empty my bag a few times some days it seems never ending. I’m up twice every night to empty it sometimes more which results in broken sleep. It does restrict your work situation depending on your employer. I was a nurse but felt I couldn’t keep leaving the ward to go to the loo, I even tried only having breakfast and not eating again all day till I got home, not practical when you worked eight hour shifts. Working in a shop especially if you are on checkout would have similar problems. So you need to have an understanding employer and find the right employment. So you are restricted. I think the biggest problem is that employers, benefit assessors don’t really understand what having an ileostomy entails or the effect it has on your life.
I too have a hernia around my stoma and had the hardest time keeping bags in place. I was often late for work and my gastro dr excused me 3 days per year on fmla. Had the hardest time ever proving to her about bag issues. That’s when they seen I had the hernia. All this going back and forth with them caused so much stress that the good half of colon I had left ended up bad. Now getting an ileostomy. I do not like drs. This is in America btw. Good luck to you all.
Hi Hannah,
I think you should look into the Social Model of Disability, a lot of the disabled community identify with it now because it focuses on the barriers in society rather than someones ‘condition’
Where I currently work, we work with the social model because the social model stops the need of feeling like the person is the problem.
I am a part time wheelchair user and have a severe curvature of the spine. growing up i was always being made to feel like the outcast but as i got older i realised that I wasn’t the problem, society was, and if society was more inclusive, disabled people could live as equals.
Definitely think you should look into it and see how you feel. Live isn’t always about identifying as something but sometimes it helps. I identify as disabled, but by society not by my impairment.
All the best
Becky Dann
Well said. I like to thing of labels like this as a tool. Just as I think of diagnoses of Autism, anxiety etc as tools for learning new coping skills, finding solidarity, gaining understanding from others and shaping your environment to meet your needs.
From the govt’s perspective, a “legal” definition of disability has a high bar and burden of proof because it is necessary to access a certain level of assistance and protection, but beyond that, the language of disabilty can be a useful tool socially and individually. When I broke my ankle last year, I suddenly wasn’t able to do a lot of the things that I could before, for a significant period of time. Couldn’t leave the house for a couple of months, in fact.
I wouldn’t have met the legal definition for disability because I would recover and it wasn’t long term, but I had certainly been disabled by my injury, and was further disabled by my environment (full buses, not having a small bag to carry things so I would have to throw stuff to get it from a to b unless I could fit it in my hand around my crutches).
Natalie
This is something I thinks about for myself a lot. I’m 17 and had scoliosis surgery when I was 14 (so I have two titanium rods fused to my spine. these limit my flexibility and stay in for life). By Australian definition it’s not a disability. But when you said “I can’t run, skip, jump, walk long distances, stand up for long periods of time… However, this is not permanent. I am in recovery” really resignates with me. I can’t do any of those things either, at least not until my muscles strengthen.
I consider myself as having a medical condition. But if it ever came to a circumstance where I’d need benefits of some kind id say I’m disabled. It’s a word people understand and are more likely to take seriously.
My comment feels all over the place but that’s my thoughts from my personal experience. Wishing you good luck with your recovery Hannah <3
As someone with Type 1 Diabetes I understand how you feel about feeling disabled/not actually being disabled/not knowing what words to use to describe yourself. For someone with diabetes some days you feel completely normal, able to experience life like everybody else with the exception of stopping now and again to check blood glucose levels, inject insulin or change insulin pump cannulas and cartridges. On other days however diabetes can have a huge impact on daily activities, something as simple as having wake up every hour during the night to monitor a high blood glucose can have a huge impact on someone’s ability to carry out daily tasks the following day, low blood sugar does the same. A low blood sugar needs 45 minutes to allow for full brain recovery which is a large chunk out of someone’s day. I found your post very insightful and relatable to my own condition. Thank you for being so vocal about your health as even though my condition is incredibly different there are similarities in management and knowing other people are dealing with similar issues is really comforting.
I couldn’t agree more, as a fellow t1d. Thank you for writing that comment and thank you Hannah, 💛
I couldn’t have put this better myself as someone with T1. I always get people saying I’m not disabled “it’s just diabetes” but they don’t understand the day to day struggle and simply just the pure exhaustion it can cause. So glad it’s not just me feeling this way about diabetes or chronic illness in general!
I just read you blog very touching I have dyspraxia since I was born it’s mild but still have learning disability I am supported by a charity call Langdon who provide all kinds of stuff. As I seem normal on outside on inside I struggle a few things find emotional things hard love your blog
I found this is extremely interesting. As someone with myalgic encephalomyelitis I feel that I do meet the requirements yet I wouldn’t say that I am disabled. I think that might mainly be because many people’s perceptions of disability are more extreme (??) than how I feel. A lot of people choose not to ‘believe’ in M.E so I also think that plays a part in it. I don’t know what I was trying to say in this comment haha but I loved reading this Hannah!! xxx
I’ve been trying to navigate this also. I think it’s particularly hard for me because sometimes I feel reasonably able and other times I feel like I’m dying 🙂
I have fibromyalgia which is a chronic illness which I will probably have for the rest of my life, it affects my day to day life and makes it di to plan for the future. I am disabled but I still don’t feel comfortable using the term. I don’t feel disabled enough which is a ridiculous argument but one I worry about when I do use the term. Everyone experiences illness and injury differently and blanket terms like disabled and able bodied leave a lot of cracks in between. In my opinion if you find a term helpful or applicable, and it isn’t taking away from someone else’s use of it, then go for it.
By the social model of disability, yes, you are disabled. If the toilet facilities you require were available everywhere, then you wouldn’t be. The problem isn’t your stoma, the problem is lack of facilities. In the same way that if everywhere had flat access, people who use wheelchairs wouldn’t be disabled. If everyone could use sign language, Deaf people wouldn’t be disabled.
I can’t speak for other people with disabilities but society does not make me “disabled” – I have ME and not one thing could be changed to society to make me not exhausted / in constant pain etc.
This is so interesting to me! Who gets to decide whether we can use the label is a weird one, you’ve got gov’t rules Vs the community. I’m a migraineur spoonie and technically have enough ‘symptom days’ most months to qualify as disabled, but the impact on my life would probably disqualify me! I have a stressful, high-powered job but because I can work from home I manage my spoons sufficiently to keep up at work. I’ve only recently got comfy using the word ‘spoonie’ to describe myself and I definitely feel ‘less-able’ some days, but wouldn’t go so far as to call myself disabled as most days I’m totally fine! Some days however I feel if there was another category between able and disabled it would get me some more help moving through the world. It seems strange to me that your condition wouldn’t allow you to fall under that umbrella if you wanted to, but if you have the Radar key then you are hopefully getting the help you need, if not the label. Hope that makes sense! All the best for your recovery xxx
As for classification, you said it yourself, it’s down to the individual to decide, you know what you can and can’t do better than anyone, and how long it will be like that.
However, festivals… quite a few festivals these days have “posh loos” little trailers with lights, actual cubicles, warm running water. The big ones do it on their VIP campsites sometimes. A bit far from the arena but good for in the night. Worth checking the VIP tickets for some festivals. The other option is a head torch for light, a leg satchel (for your fresh bag, wipes etc) to leave both hands free, and a bandana round your neck with perfume/olbas oil on it (helps with loo smells, can be pulled over mouth to breath through if the smell is mega strong)
Hope that helps, or gives you some ideas so your festival journeys can resume in future!
Hi Hannah, I’m currently doing my masters dissertation on disability and natural disasters and I’m reading a lot about what it means to be disabled. What you’re describing here sounds a lot to me like you’ve been temporarily disabled due to bodily limitations, and while this may change in the future, by disaster management standards, you’d be considered disabled and you would have extra needs in an emergency situation.
I’ve also read a lot of really interesting articles about how we perceive disability, and how we shouldn’t think of having a disability as something that happens to the unlucky few. Instead, we should perceive able-bodiedness as a temporary state of being, as with age and life, many of us will go through periods of being disabled at one stage or another.
I hope this has helped you a little bit to get your head around how you perceive yourself and how you identify. Just remember that it’s entirely up to you how you choose to define yourself, even if it’s temporary. Much love xxx
A stoma meets the legal definition of disability as set out in the Equality Act, as one of the things that counts as day to day activity is continence, and an ileostomy/colostomy/urostomy are incontinent stomas. The fact that a bag is used to collect any waste isn’t counted, much as prosthetic limbs are not counted for people with amputations.
Being legally disabled, and meeting the eligibility criteria for divisibility benefits are too entirely separate things, which people often get confused about.
A lovely but poignant kind of story, adapting to life with a stoma. I have had my stoma for 22 years, live a normal life and have done a lot of things. I have camped wild in Africa having to use a hole in the ground as a toilet and no fun in the dark but a head torch will help. I feel you can adapt to all situations so I think you will go to festivals again. As for being disabled I don’t consider myself to be.
Hi, I do agree having had an ileostomy for 26 years, no restrictions for me, I do not class myself as disabled and have camped and been to many festivals including travelled extensively around the world in remote places with no problems that I can’t deal with. Having a stoma is just different plumbing and does not need to be life limiting so it people shouldn’t make mountains out of mole hills.
Hi Hannah. Thank you so much for this. This was just what I needed. I’m 21 years old and from Danmark. I’m currently in hospital where they, this Tuesday, removed half my left lung because of cancer. I’ve been thinking a lot about the hole disability thing, and am I now the sick girl instead of me, Amalie?
Your story have also helped me going in to al this. And I’m thankful that you’re sharing so much of the real this and go into the gross things of hospitals and being sick and in recovery.
So thank you for sharing it all 🌸
Kind regards
Amalie
P. S: I’m writing this while I’m trying to shit, so I possibly can come home to day
Disabled is a funny word for me also. I am seen as disabled, however I was born this way so I know no difference, so in my mind I am not disabled I am differently abled, as is the rest of humanity (no two people are the same).
My odd relationship with the word disabled is a funny one, until recently the dictionary definition of disabled read as (to me) – adjective, inoperative or cease function. In other words you do not work and in my literal brain I understood that as I am dead as I do not function.
So according to the old definition, a disabled loo is permanently out of order, as it should not be working.
The new definition is – adjective, having a physical or mental condition that limits movements, senses, or activities.
I however like the Welsh word, which is anabl (an-able) as it is more positive as it sounds like when spoken, I am able to do things as I am able to.
Finally, I recently set up an organisation called DAPPER – Differently Abled People Providing Events Responsibly – and it is a group of family and friends helping local groups and people with their event, as all of us have different abilities not disabilities (even though 4 out 5 of us are recognised as disabled)
Hi, just wanted to say that if you did want to go to a festival, at least in the UK, the majority are accessible to disabled people, or anyone with needs. There will be specific disabled toilets, camping areas for disabled people with access to a fridge for meds etc, seating areas for wheelchairs and people who need to sit. Go on the website and look for accessibility section. Same goes for any type of event like a concert or show. Ring the venue and ask about accessibility, I have done so and been able to book accessible seats at a reduced rate, or have been able to get a free carer ticket. I have fibromyalgia and chronic fatigue as well as am ileostomy. I don’t use a wheelchair but do struggle with walking around due to pain and fatigue. X
Hi Hannah, I think you are borderline disabled, but I suppose as being “disabled” carries with it certain connotations if you feel happier saying and believing that you are not disabled, then that is perfectly fine.
You’re such a brave and courageous girl. 🙂
Simply yes I would say you are on two counts if you self identify which you seem to do. Also though if you google the social model of disability I would argue you are. So yeah but up to you.
I have crohn’s, I haven’t had surgery (yet), but in my country I am considered disabled. It took me five years to accept it and finally decide to apply for any benefits. And this was a big step in the process of how I view my illness.
I think the definition of what a disability is can be a bit understated, especially the length of time you need to be in difficulty to be considered disabled. Example is I went back to college in a wheelchair due to an injury. I’m still recovering but my college couldn’t give me any supports as I had to have been this way for over a year. Thank god for friends. If you are affected greatly from a medical condition I think you should be considered for disability supports, at least considered. My dad hasn’t been able to work for years due to a medical condition. He get sick benefit not a disability allowance. Years….. It’s a tricky concept.
You’ve now had two open surgeries and your life is changed. Doesn’t that mean you’re somewhat disabled? At least at the moment during your recovery.
Very interesting discussion Hannah.
Hiya Hannah, This is a topic I feel should be addressed as disability shouldn’t just be seen as a long term thing, if you are unable to do things short term because of a illness or situation where you can’t do normal day to day things because you are recovering from a operation or have certain conditions then why can’t we have a 6 month certificate outlining at the present time we have a short time disability, I think it is a shame that people with IBD are classed as being able to live a normal life when some days it’s hard just getting out of breath I wrote a letter to my local mp and also tried to message her on Facebook in which I know she received and opened the message but yet no reply was ever recieved
This is really strange, but England is pretty much the country that’s a bit elitist about being disabled. I have Crohns, have had surgeries (my scars are pretty much exactly the same as yours) and a stoma bag, but now I poo ‘normally’ (my case was very different though, I had almost all of my bowels left, they only cut out a little bit). In Poland, I was disabled. I got allowance, a disabled discount for everything, I could get parking space (we never got it though because we never really needed it). England is different – I moved here to study, so obviously I’m not very fussed. I live a fairly ‘normal’ life apart from a very rare flare-up and not rare diarrhoea, but I can’t even get free perscriptions for my medicine, which I have to get every month. It sucks to not have any support in that, but I’m lucky my family is an amazing support system.
I do use the disabled toilets though. Anyway, that was a ramble. Wish you all the best xx
I hate to be that person. However, it’s a céilí, not caleigh x
Embarrassed that I’m being that person in return, but that’s the original Irish word that the Scottish Gaelic word comes from – the Scottish dance party, if you will, is a ceilidh rather than a céilí! x
I had a stoma for many years before j pouch surgery and it never stopped me going to a festival. Porta loo at night? Head torch and plenty of baby wipes! Download festival has amazing disabled facilities that I get access to and never have any issues
I am so proud of the way you are able to eloquently express your feelings without minimising them or seeming overly dramatic. Your truth is yours to tell and you do t so beautifully. I also adore your body positive photo shoots.
I suffer from IBS and although I have it under much better control that I have in other years it is still something that affects almost all of my life, from what food I eat to how I choose to travel, or even where I work from in my workplace.
I will never need surgery for this, I can still work, my body is not damaging itself, but the days when I’m house bound definitely make me feel like I need an identifier. “Chronically ill” has become my label of choice when people ask why I’ve had time off work or why I’m not coming on certain trips, or why I’m just staying in to take some time to myself and recharge.
It’s hard – but it’s getting better. I wish the same for you and thanks for sharing your journey through this difficult season ❤️
you have different needs and fortunately much are covered with the radar key and the not paying for prescriptions but perhaps (as it is clearly recognised as such) have a middle way for chronic conditions?
And our society does not do convalescence very well. Perhaps an attitude change and awareness needs to be raised with these issues. Though at the moment the disabled community is being attacked and marginalised. This is a case for intersectionality. Perhaps chronic has the place Asexuals have in the LGBTQ+ community? Just things that came to mind when reading this.
This is really interesting for me to read, as someone who does qualify as disabled by the equality act, has received accommodations at work for help with this disability, but does not qualify for a radar key or NHS exemptions (radar key I can take or leave, but the exemptions would be handy if I ever got more severe). I have been examining my life very closely lately, as my condition has worsened over the years, to ensure I have a way of sustaining my life because (I feel) that disability benefits are insufficient financially to be able to live well on (which is a whole other bag of worms to open).
It’s interesting the definitions of disability, especially when it comes to medical vs social, and then of course including government (because they make their own rules to decide who does and doesn’t receive payment). It’s all a jumbled mess IMO. Too much to talk about in a single blog comment
Shame you couldn’t come to Finland 🙁
I don’t know if it helps you but a solution to festival toilets might be bringing a headlamp. They’re small and leave your hands free to do what ever
Hey Hannah! Sounds like you’re new to having an ostomy, love the way you seem to be embracing it, positivity around the subject is so important. You will be able to do everything again – even festivals! I went to Glastonbury twice when I had my illeostomy, normal camping scenario and no special treatment (tried to get disabled wristband, but as I’m not ‘registered’ as disabled, I didn’t qualify for one). Although I did flash my bag at a guy who wouldn’t let me into the disabled loo as he didn’t believe I had a illeostomy 😂! I was really high output too, but you can get sachets of silicia type gel to put in your bag to absorb the liquid, really, really helped me in situations like that. Good luck and see you in the fields soon!
Thank you so much for talking about this! I suffer from Crohn’s Disease and it’s such a strange feeling that while I am not categorised politically as disabled, my illness significantly impacts my quality of life and often leaves me feeling utterly useless when I can’t partake in the things that I was once able to.
Hi I know wot you mean I’ve had my stomer for 8 years not by choice 🤬but that’s another story I fill disabled and always aware of it it’s uncomfortable and a lot of the time sore I have to wear bigger clothing most of the time I keep it to my self and hope know one notice the bag throw my shirt but hay I’m still here sorry to go on but I haven’t done this before Thanks Mick
Thanks for raising so much awareness Hannah! I remember watching a video where you said you were on Azathioprine and I was like “I take that too! “. You’ve been such an inspiration.
I’ve written a similar post but I’ve come to realise a lot of time people don’t want to label themselves disabled due to internalised abelism. I’m not saying that’s the case for you but it was definitely for me. I struggle to do my own hair, daily chores etc. So I think the “qualifies” me as disabled. But it is a very difficult topic to discuss.
Once again a big thanks for all you’re doing to raise awareness!
Hi Hannah
I’m type one diabetic, I don’t think I technically classify as disabled but I classify for disabled students allowance. I prefer to say that I’m not disabled, but I have a disability.
I have been following you for a while now, mostly on YouTube. Reading this post speaks volumes to me right now. Totally different medical condition but I had back surgery at age 15 due to a ruptured disc and have lived with chronic back pain pretty much all of my adult life. Sitting for more than a few hours can be agonizing, especially while traveling. Most people can’t tell by looking that I have a medical condition and being a bigger guy there are often expectations that “oh this tall man will help us move/lift this heavy object” which always becomes a stressful situation as I either help them painfully or have to briefly explain I can’t while they size me up or seemingly question my “masculinity”. I too recently began wondering, “Am I disabled?” and I found myself nodding as you walk us through your situation in your post. Stay strong!
Hi Hannah you are doing really well. Ive had my ileostomy for 50 years and I can assure you you will dance again. I still do at every opportunity! Things were so different when I had my surgery. No stoma nurses to guide you then. Keep up the good work with ypur bloggs xx
I’m sure you’ve thought of this, but would wearing a head torch help with the stoma emptying in the dark?
Head torch = solution to camping toilets for me!
There’s a work round for most things.
Don’t take one nurse’s words to heart. It’s very disabling – I’m up in the night twice still 2.5yrs on, it takes much longer to get up and out for work, and I can’t do emergency work because of the unpredictability of my stoma.
But I can do all the things I want to – I have been glamping, swimming, on a foreign holiday, and I have nowhere near the body confidence you do!! – the photos are amazing!!
As a long term ileostomist (not sure that’s a word) festivals, even fairly basic ones are totally possible! There’s some definite tips and tricks which make can make life easier to manage (along with a bit of prep).
A head torch is a must, even a cheapy little one. With some cunning hacks it can be used as a lantern, and when it comes to changes/empties hands free is always best.
Secondly, have it a full size bin bag as a piece of clean plastic to kneel on, and lay stuff out on is a god send. A single one can be folded up and doesn’t take much room in my change kit, but can easily be replenished.
Wet wipes are excellent, and Are usually free from your ostomy provider (Well charter do them for sure).
There’s lots of other things that can make life easier too, but too many to list here.
Lastly, the need to wake up through out the night should die down, stopping the need for a night time visit. As you get more comfortable, you’ll find less and less that it’s a thing. You can always play around with some dietary tweaks that might help, or some of the gelling agents that are available on prescription to help with the confidence to sleep a full night
I have been following your uTube and blogs and the stoma bag does not detract from your looks – you are still a beautiful young woman. I am in my 70s and sometimes need a cane to keep from falling and I have a t-shirt that says “I don’t fall – I do random gravity checks”. I am also deaf but have a pair of cochlear implants ( which the metal detectors at the airport complain about). There are always personal and legal definitions and deciding whether or not you are disabled is a pain. Maybe you could get your stoma bags in colors to match your underwear? Recovering from surgery of any kind is different for everyone. I also had my left shoulder replaced since the bones were grinding together and recovery takes time. I hope things improve for you and I firmly believe that the stoma bag does not detract from you. The scar is kind of a badge of honor – like a war wound can be a badge of honor.
You can use whatever language you feel describes you, but you should be reminded that being disabled is not a bad thing. Invisible disability exists, so even if someone may not see your disability when looking at you (while you aren’t showing your torso), you could still idenitify as disabled. I too was afraid to identify as disabled earlier in my life because I didn’t think that my disorder “was enough” or “counted.” But this all changed when I learned more about ableism, and one disabled person said that if someone experienced ableism in their life, they could identify as disabled because the prejudice of ableism is disabling. So, now I do call myself disabled, because even though my disability is invisible at most moments I do experience ableism. I’ve met some of the most supportive people in the online disabled community, and they always remind me that the point isn’t how severe someone’s disability is, but if they are disabled at all. We must recognize privileges like walking, seeing, hearing, living without chronic pain, etc., but if we feel the label disabled applies to us, we are allowed to call ourselves so. #DisabilityNotVoldemort is just one of the hashtags online meant to fight against phrases like “differently abled” or “handicapable” because being disabled is not a bad thing, and disabled is not a bad word.
This was an incredibly interesting and eye-opening post to read. I think with so many labels, we can feel like we fit the bill but yeah, there’s this thing where you don’t want to call yourself that because you’re not quite sure if you can. Like you said originally though, I think the key thing is that you’ve gone through something that’s changed you, and your life as a result, so you should totally feel entitled to use whatever terms you deem appropriate!
Julia // The Sunday Mode
Hi Hannah. I’ve had a stoma for 5years and believe me, you can still go to festivals! Get a head torch for the darkness. Your stoma won’t hold you back from anything at all! Good luck.
Hi Hannah, I have noticed quite a few of your posts over the last few months as I have CD and an ileostomy (since 2011) and follow the C&C UK facebook page. Having read your post above, I identify with a lot of what you have talked about. I am a musician by profession and as such, have had to empty my bags in a range of environments! Regarding what you mentioned about having to cancel an event and the prospects of going to festivals in the future, my two cents worth would be that I went to my first festival (Glastonbury) last year and with a head torch, had absolutely no problems with bag emptying in portaloos, day or night!! Both hands free as usual! It’s definitely a small inconvenience worth enduring to be able to go and do something you enjoy. I’m actually off camping this weekend – torch is packed! 😉
I have recently started using a hearing aid after years of believing I had a hearing problem – turns out I’m partially deaf. I qualify for, and have, a Disabled Persons Railcard.
Do I have a disability? Yes. Do I count as disabled? The jury is out. I have just had surgery for a debilitating wrist condition and the recovery process makes me feel more disabled *scoffs at my own wording* than my deafness does. Guilt over using the term, plus legal definitions makes my brain spin.
I feel this entire struggle, Hannah. Best wishes with your recovery.
I relate to this argument quite a lot. I have a stammer and have done since I began to speak at the age of 3 (yes, quite late). This is technically a ‘long-term’ condition as many consider it a neurological problem and therefore will never fully go away. It does affect my everyday life in quite a significant way in that it takes me much longer to get my words out, I also needed longer in oral presentations in university and cannot be the one to put through orders at my restaurant job (per my request). I believe it comes under ‘invisible disabilties’. People would never think I have what I have but at the same time I do need the help. Obviously I’d never use disabled toilets because well I don’t need to. Its just a different kind of disability, in my view.
Hi! Personally I have ulcerative colitis, but mine is moderate and I’ve not yet needed surgery, but I do class myself as disabled. I do think that it has a permanent and significant effect on your life, and as I result do describe myself as disabled. But it’s difficult when it’s an invisible disability, such as having a stoma, people don’t realise how much of an effect it has. Well done for talking about your illness and experiences 🙂
Yes I completely do say that I am disabled, some days having my stoma does stop me living a ‘normal’ life. However I don’t think I will be disabled for the rest of my life, I am slowly improving from surgery 3 years ago and currently receive disability benefits because of this. It’s definetly work applying for, because it’s helps me with all hospital costs!! 🙂 thank you for this post hannah!!
I’m classed as disabled because I have mostly mental health problems including Borderline personality disorder, complex PTSD, anxiety, depression I can’t list them all it would take to long and I’m currently living in a psychiatric community hospital. so I can’t work because I’m under section of the mental health act. I don’t consider myself disabled sometimes because my condition changes day to day. some days I can get out of bed and get on with my day reasonable okay other days I can’t dress myself I can’t even get out of bed or have anyone near me because of flashbacks when I look back at those day I am disabled. but 7 years In hospital is a long time but I’m getting better as you say I’m in recovery. I don’t know how long it will take for me to join society again as a ‘normal person thanks Hannah for bring this up ❤
My dad has a stoma and is classed as disabled (with all the disability parking badges/cards/identity to carry around) , so i’m very confused by how you would not be! I wonder if there’s some sort of age where it becomes a disability or whether a certain number of surgeries? Either way I think this is a bit stupid because no matter what, this hinders how you do things in life. Regardless I believe you’re extremely strong and I’m so glad you find the strength to talk about your illness x
Céilí not caleigh Hannah 😂
Hannah, of course you can use a Porta-loo!!!!!!!!! Invest in a head torch and brave it! It’s not pleasant, I fully understand that but please don’t resign yourself to not doing things because you’d have to use a Porta-loo. I’m 26 and have had an illeostomy for 4 years now and I have been to a couple of festivals post surgery. Not ideal and not the nicest but prepare and you’d be fine 🙂
People look forward to showers post festival anyway but the way you’ll look forward to a shower after a festival is next level, it’s almost worth it for the incredible shower 😉
Well I have always considered disability in the most literal sense. You are disable to carry out every day activities like you would before so I would in your situation choose to use this work. But like you say it’s whatever you feel comfortable saying. I just really want to tell you how absolutely insanely amazing you are for sharing such a difficult time in your life because it really does help so many people feel okay about who they are and what’s happening to them! I just love this so much that this discussion is happening!
I’m not disabled but I have problems with PTSD. I am pretty sure that I would benefit from having a service dog, however you can’t get service dogs in the UK for mental health conditions. You can get assistant dogs, which are more like personal therapy dogs but they aren’t allowed in public places like service dogs are. It’s frustrating because my flashbacks almost never happen at home unless I see something triggering, so an assistant dog wouldn’t be ideal.
-Emily
Hi! I get so inspired by you, and I’ve been fighting this question myself.
What if we could be able to describe ourselves with our own words depending on how we see ourselves and how we want others to see us, and it can vary. Sometimes handicapped may describe us well and other times not. And others would listen and meet us half way.
I’m bipolar and I bring my tools everywhere just like other people with illnesess needs to carry stuff with them, but since i’m not considered to be sick by many, wich is a whole other story but basically “mental sicknesses is really just about being lazy and complicated”. There is no space for me to use them even if there was space, cause I don’t qualify. I just want some freakin space so I can use the tools I have, cause I got a lot! So really i’m not handicapped cause it’s society that doesn’t even accept me.
But at the same time if someone called me handicapped I would only feel like i’m finally being recognized. It would be a positive word.
So I have a really complicated relationship with that word.
I find this very interesting. I remember how much of a fight my mum had with doctors trying to discuss my ‘disability”. The problem to my illness as a child was that it only lasted for two years. But that was two years of wheelchair use and crutches. After I had major surgery, I could not walk normally and was not allowed to walk normally for two years. My mother having to do day to day activities with a 7 year old daughter but knowing that everything is 100 times more difficult. I don’t remember much of it but every time my mum talks about it I can see the anger in her over the fact they wouldn’t give me a disabled parking badge at the least. My mum always says that she is so incredibly grateful to my primary teacher who’s husband lost a leg and who was doing everything in her willpower to make life easier for me. Including planning my classes to be on the ground floor of the school so I wouldn’t have to do stairs on my crutches.
This really resonated with me. I’ve never considered myself disabled but I’ve been having moments of temporary disability. I have endometriosis and severe pelvic pain (don’t know why). Most days I’m fine. Since having surgery, I don’t feel able to move like I used to. I have so many days where I can’t get out of bed because of severe pain. Does that mean I’m disabled? I’m not sure. I’m in the US with slightly different definitions.
Am I the answer is yes I am and I might be able to walk that is one of my goals but yes I will not be able to do it for long times. You should be okay to call your self that in the last year I have met people with different types of disability .
Personly, I would call your case a temporary “illness”, of course, you’re not ill, but I think it’s the best term to describe what you have written. Ok, it “disables” you from doing some things now, but you can get back to those things when you’re fully “better”.
I enjoyed reading this. That is a very good question, “am I disabled?”, and honestly, I can’t answer that one myself, in some ways what you have said points towards the answer “yes”, and in other ways, it’s “no”… Difficult to answer.
Free prescriptions should be for permanent stomas? Temporarily prescriptions should be paid.
Hi there Hannah, I also have a permanent Ileostomy my surgery was performed over 11yrs ago now & initially all went well unfortunately due to nobody’s fault I had to undergo further surgery the following year. I am pleased to say I have never looked back & although I still have challenges some days I live a very fulfilling life, I continue to work full time in a demanding job in mental health, I remarried 5 yrs ago to a wonderful man who has always taken care of me through my darkest days, I have seen my first grandson born & without the help & support of close family & friends some days would have been very tough.
Some people are still ignorant of the unseen illnesses people suffer from I have been questioned by store staff regarding using the disabled toilet, I have been mortified at airport control when travelling when security staff needed to know why I had a Swelling under my clothes & was I carrying anything illegal 😱.
On the whole my life has improved a 100% since surgery, I don’t class myself as disabled however do come under the disability at work act, life will always have challenges as it will for everyone, enjoy every day & make them count. Wishing you continued good health & a happy healthy life x
I had a stoma really struggled going out and doing things but just stood strong and when I went in a disabled toilet I told them the truth and they soon backed down . I’ve had it reversed and I’m happy it’s gone but I go to the toilet more now as I have no bag to fill up it’s hard but you keep going and try your best that’s all u can do
This is something that I have thought a lot about. I recently applied for a job and it had the usual “tick if you’re disabled” box and even a scheme that if you ticked it and met the basic job description they would definitely give you an interview.
Now could I tick that box? Before my ileostomy op, yes 100% my Colitis was so severe I could barely leave the house.
Post op, things get more difficult, in so many way my stoma has given me my life back, however I still suffer the effects of UC. Severe fatigue, multiple mouth ulcers to the point I can’t even talk, loosing blood from my rectum just to name a few.
I decided to call my stoma nurse, she said “no you’re not disabled and you don’t have Colitis anymore because they have taken your colon out.” Well given that I beg to differ on whether or not I still have Colitis or not I decided to call Chrones and Colitis UK to see if they could shed any light. “Oh that’s a really interesting question, we don’t know but I guess it’s down to how you feel about it, try calling the IA. thanks for asking though it’s made us all in the office think!” I got the exact same response from the Ileostomy Association who told me to call another disability society. I spoke to an insanely rude guy who again would not give me a definitive answer but got me to describe my worst day and said that would fit the criteria.
I was really stuck as it changes day to day, I was thinking about not ticking the box but then what if I got the job and then got questioned for always spending too long in the loo or having to take too much time off for appointments? I know they can’t discriminate against me for these things but I’d feel better being able to declare it right off the bat!
In the end I called the company that I was applying to and they told me I was fine to tick the box, they would not ask me about it in my interview. (I got an interview but sadly did not get the job).
Hi Hannah loved ur article. I have my stoma around two months now n everything uv said iv went through. Your actually lucky that you get it bags for free on nhs here in Ireland I have to pay for all mine.. on the disability thing I don’t understand how having a chronic illness is not recognised as a disability are we any different to someone with diabetes. We all no how disabling this disease is on you especially the chronic fatigue you feel. Keep up the good articles n the raising awareness for all sufferers.Wud luv to sit and ave chat wit . Keep strong ….Mick
Sometimes I feel like I am disabled. I have an Ileostomy and it is a permanent one since my rectum was so very badly infected due to ulcerative colitis and did not get better in 2 years of different medical treatments, this though is not why I feel disabled. I feel disabled because I dehydrate at an extreme rate and have to drink up to or more than a liter of sugary nasty electrolyte drinks, I faint at least 2 times a week and I feel dizzy a lot of the time due to my extremely low blood pressure and I don’t know it that means I can be classified as disabled but it can be very dangerous fx. If I stand up even if it is carefully up from a bus seat and go out of the bus and faint I can hit my head in concrete and there are so many other ways it can be dangerous, I can’t even stand for long it exercise much.
I wish it were easier to do rþthis sort of research. Thank you for being so open about your bag. You’re extremely beautiful (this is coming from a gay man don’t worry not trying to be a creepy)
I am registered as disabled, so i receive the benefit from that and also things like the parking badge, toilet access etc. But even though i am entitled to those benefits i always feel a bit guilty using them. When i get that benefit money go into my bank account and i start using it i feel as though that money isn’t mine, as though i have done nothing to earn it yet 10 years of illness and 4 surgeries probably means i by far deserve the help. The same thing with the radar key, i always feel guilty using the disabled toilets and being a 6ft 7in tall healthy looking man i get some funny looks too.
I have a similar problem to you only mine was crohns disease. I had my colon removed and the j pouch surgery done over 3 ops and then a 4th last year to clear a bowel blockage due to scar tissue. Now i’m suffering from a whole load of other little things that stem from that so i know i deserve the help, it just doesn’t feel right and it never has.
It’s because society has deemed a disabled person as needing a walking stick or a wheelchair or being a lot older than i am now and it makes me wonder if i am actually disabled. I can walk around, i can handle my own personal needs, i can cook etc. but that’s about as far as it goes. Yes i have a physical illness that prevents me from doing everyday tasks and that illness isn’t going away but i “look ok” so i can’t be disabled… right?
I’m not good at explaining this stuff but my point is that you’re not the problem, it’s society in general that’s the problem. It’s bad enough that we have to deal with the illness, the treatment, the recovery, the medication etc. We don’t want to deal with the shit (pun!) that society throws at us, we just want to get back to how we were before.
Interesting thoughts……I’ve had my Ileostomy 12 years and don’t consider myself disabled as it doesn’t stop me doing anything, including camping (try a head torch for night time emptying 😉) having a bit of a battle with my boss about working hours at the minute tho….im a nurse on a colorectal surgical ward and trying to explain i get tired due to my condition is becoming frustrating you’d think they would be a bit more understanding considering where i work!
Hellow Hannah!
Life gave me the fortune of not having any disability. Since I saw your information on the BBC website and where they referred to you had a blog on the internet, it was the moment where I inquired about your work and I was simply admired and it was from there that I follow your publications.
I congratulate you and I hope you will continue as you are an example to follow for many people.
Greetings from afar!
I’ve been thinking a lot about this recently because I technically have a disability (ADHD & SPD) I don’t feel like I can say I am Disabled so there’s this weird grey area where it’s difficult to talk about because I don’t want to speak over other people’s expierience and it’s like being not disabled enough for one community and too disabled for another so this came at a really perfect time.
Hello!
Brilliant post. Some good news, you WILL be able to go to festivals with a stoma. I recently went to Latitude and applied for a disabled toilets pass before hand. The disabled toilets are very roomy so it made a world of a difference. I expected other festivals have similar passes. Go for it!
You absolutely will go to a festival again! I initially used the disabled portaloo but now I manage fine in the normal ones. You could use the torch on your phone if needed. Give yourself more time and your confidence will build. As for the disabled thing – i totally get you. Then I think I’d feel a fraud to label myself disabled as I’m so healthy. I do sometimes feel ‘different’ in some way but give yourself more time and your opinion will change. Just started following you. Good luck x
I have had my stoma bag for 10 years after a long battle with UC. Since having my operation I have been to loads of festivals and camped, jumped out of a plane, travelled the world and been able to do so much more than I could before my stoma. I am very lucky that I can sleep through the night without any problems. You will be able to do so much more than you could imagine
Interesting post, thanks!
Very Minor Correction: “cayleigh” is spelt “ceilidh” – I know it’s a nightmare, that’s gaelic for you.
Hi Hannah, your video about using a walking stick and this blog post really resonated with me. Not in the sense that I have to use a walking stick, or having IBD/a stoma, but more about your comments of having to make a show of really needing the walking stick all the time when in public. I have a chronic pain condition in my dominant writing arm, which developed from RSI when I was younger and unfortunately just never went away. This affects me at work because it worsens when I write fast / for long periods of time and during typing. I’ve taught myself to write left handed and I can now type reasonably fast left handed. Occi health have gotten me a laptop with voice dictation software which is great. However, I don’t necessarily always use it as I can write, just slowly and I have good days and some bad pain flare up days when I rely on the software more. As a person who doesn’t have a visual disability / equally probably doesn’t necessarily count as disabled by the definition you mentioned above, I do worry that people will think I’m faking it, when they see me write perfectly normally with my right hand. It makes me feel better knowing that someone else has had these thoughts and feelings too, albeit with a different condition. Thanks for your videos and post I always find them interesting and thought provoking. I particularly liked your hormone diaries series 🙂 xx
Oh my Gosh! Thank you for putting this into words.
I also have an illeostomy, going on 6 years now (I’ve chosen not to do j-pouch)
I had the same thing where my ostomy nurse told me its not a disability, but I can qualify for grants and also got the medical exemption card while living in the UK.
I feel because its hard to classify an ostomy, it also becomes hard to tell people. Since having my ostomy I no longer have ulcerative colitis symptoms so I don’t feel like I can say “I have an autoimmune disorder, or ibd” but I also feel really weird saying “I kinda have a disability…” especially when it has come to dating the last few years. And when I was first diagnosed with Colitis I was told its an invisability (invisible disability), but with surgery the part of my body affected by it was removed, so does that mean I no longer have a disability?
To this day, I still don’t know how to define my ostomy; I usually say I have a medical condition, and only expand if people ask for more details, including saying “its kinda hard to classify, cuz it is and isn’t a disability….”
Hi Hanna.
What the .gov.uk website does NOT take into account is that a person doesn’t have to be disabled for the rest of their lives. Just think, a person has a car accident and both their legs are broken. Would this mean that the person isn’t disabled or suffering from a “disabling condition”?? Common sense has gone right out of the window once govt bodies become involved with such issues. It doesn’t even seem to have lingered for those who are permanently disabled like myself. Especially when election promises have to be met and the govt tells the DWP and ATOS, “We want 85% of claimants off this or that benefit regardless of their condition(s)”. Don’t worry, I am not going into a ran here. Merely proving my point about the complete lack of common sense being applied. So are you what I (a so called qualified disabled person) would count as disabled?? Definitely YES!!! As for your walking stick, if you feel bad at not needing it in he morning, but by the afternoon you feel like without you will just crumple, then when it comes time to use it, stop walking, sit down, give yourself 5 minutes and then remove it from your bag, extend it and bring it into use. No harm, no foul and absolutely no need for ANY sense of shame. EVER!!
Wishing you all the best.
You got this, you will be successful. You’re counting on you, you won’t let you down.
Hi there,
I was diagnosed with rectal cancer stage 3 border line terminal in 2017 so had a colostomy operation, good news I’m still here yippee in 2019, thx to a fantastic surgeon and 8 hours on the operation table radiotherapy and chemotherapy had the works 😳
People ask how I am all the time, and when I say, we’ll im not sure but I feel ok they sort of look confused 😆
But on the serious side yes I do feel disabled when you dribble into a bag for 24 hours at least 4 times a week and then at other times fill it instantly you then have to be somewhere where you can empty it just as quickly.
Which isn’t always available if your trying to live a normal life which I do, I try not to let it hold me back.
However when you shit 💩 yourself in public and it squeezes out the sides of your bag because you haven’t found a toilet in time it is very embarrassing 😧 and then i do the double whammy because of a weak bladder which is due to nerve damage during the operation.
I’m 💩ing Ito my bag as I type this just as I have been since 5am this morning gets a tad tiresome, but I’m alive and that’s the GOOD thing 🕺
P.S Hannah you look fabulous and thank you for giving us a soap box to stand on and SHOUT our problems X💋👊🏻
Interesting post. Thanks for sharing.
I have had an ilestomy for 5 yrs and rectal stump removal for 2 yrs. Mine is permanent I still can’t run or exercise or go for walks I am in constant pain and struggling to even work to me I think it is a disability and would really like to know if.it is.
Hi, Great blog.
I’m 58 years old and 21 years with a J-pouch.
Yes sometimes i feel disabled but am not, I do everything i used to before my op ( cycle ,swim ,ski and much more).
Just to note , if you have a J-pouch you’ll lose your free prescriptions which seems unfair as I need loperamide every day.
Anyway keep up the good blog x
I want to say you can go to a fesitval and use portaloos! I camp with my stoma and i take a little torch with me and not going to lie its pretty difficult but you find a way, ive had to deal with leakages whilst camping and “airing” out my bag and killing my partner at the same time haha! But its trial and error xx
Dear Hannah,
Your web site is very informative and an inspiration to others,
At the age of 73 and still a professional musician -had huge operation-result Stoma.
Now 76 got back to playing again then COVID 19 hit us all this year, am I disabled ?
My pride says No however I am hugely (disadvantaged) I have to have my man bag with
Me in the car, so when on a Gig I am well prepared.
The one time I needed to use disabled toilet the door had been bolted and padlocked on the outside.
So pleased that young people like you are speaking out about Stoma needs thank you
And bless you John 🎶🥁
I know this will sound very cynical but I have not seen it mentioned in the comments I have read. I think self awareness of disabled or not is all about personal attitude. so many excellent examples in the comments. Now the cynical bit……. The UK government will do whatever it can to avoid paying allowances to people. Pensioners being double taxed is a prime example. This is why the government has set the bar absurdly high to qualify for disability allowances. I am not fussed about financial help but access to disabled facilities, parking and toilets, would be a major benefit.
Hi. I have a j pouch for 12 years and I face many challenges such as infertility, anxiety, depression. I have started a blog to create more awareness and support individuals who face health challenges like myself with having a j pouch. My quality of life has been disrupted and society does not accommodate for individuals who’s disability is not visible. Let’s help each other create awareness of our respective health issues