I have a stoma and an ostomy bag - should I define this as a disability?

[Ostomate]

Sorry this might be a bit long! Really hoping I'm not going to sound like I'm minimising the experiences of others with disabilities that have a far greater affect on their lives. Ever since I started living with a stoma 2.5 years ago I've being trying to contemplate what is really a bit of an academic question regarding whether I technically 'have a disability', but tbh it hasn't been that important. But now I need to fill out some D&I inclusion monitoring data on a form and for a process I'm in and I want to represent things correctly - but there's no space for any explanation or qualification!

So, I have Crohn's disease. In the 10 years from its appearance to getting my colon removed and starting life with a stoma, I was flared up for at least 70% of the time, probably more. I definitely regarded myself as living life with disability - chronic diarrhoea, pain, malnourishment, definite limits to my daily activities. Definitely hit the legal definition of an impairment that affects my daily life lasting or expecting to last more than 12 months (or whatever the exact wording is!) After years of failing to respond to medical interventions, I had my colon removed and live with a stoma and ostomy bag.

Now? Well I have an "impairment". I CAN'T control my bowels (stomas don't have sphincters!) so I'm technically faecally incontinent. I'm completely reliant on my bags. BUT, it doesn't affect my daily life more than ever more slightly. I can do all the things that the average non-disabled person can do. I can go out without constant access to a toilet, have average amounts of energy, no extra pain, etc. Yes - there's a few tiny ways in which having a bag affects my life: I'm a little more limited with which clothes I choose to wear (for support and comfort) - but that's the case for loads of people whose bodies aren't the shape the clothes designers have designed for (e.g. if you have big boobs it's hard to find shirts that don't gape...that sort of thing). And, yes, I have to make sure I've always got kit with me just in case, but in the same way DH always takes his spare glasses on holiday because he'd be stuffed if his broke. And yes, without the bag I'd be helpless as I have poo running out of me all the time, but so would my extremely short-sighted DH be without his glasses (he can't see more than about 30cm without them, and yet is fine with them and not considered visually impaired). And yes - there's always the chance of a leak in public (it hasn't happened yet) - but far less than when I was relying on my own bowels, and that small chance is something that lots of people face (unexpected tummy upset, periods, etc). I don't need any reasonable adjustments in the workplace beyond what everyone needs for general dignity!

On the other hand, the whole idea of disability in people's heads goes far beyond the legal definition, and I've heard my condition being referred to as a disability. There's the stigma of being 'different', which whilst it hasn't affected me, has probably caused a lot more distress to others with my condition. I feel like as a 'community' we do bear some of the burden of disability, just because of being different to the norm. There are plenty of groups/people who themselves don't think their difference is something that needs to be 'fixed', but monitoring their inclusion is still relevant (e.g. watched a documentary by Ellie Symonds the other day - from what she said it's clear she doesn't think her dwarfism is an issue and has also been lucky not to have had many associated medical issues compared with some others with dwarfism, but she still 'represents' a community that are seen by others as 'disabled' and that has an impact. On the other hand, situation for people with dwarfism is slightly different as the 'average height world' isn't set up for them - my bag enables me to use the same facilities and have the same needs as 'normal' people)

Also, a final thing is that I've heard that disability should be defined as how something affects daily life WITHOUT the use of medical aids (although can't remember where I read that). Without the bags I'd definitely be disabled - but so would my DH with his eyesight, and millions of other glasses-wearers.

So, wise people, how should I answer the questions:

• Do you have a condition or impairment that affects your every day life?
• Do you have a disability?

I don't 'feel' disabled in my everyday life, but also have no problem with the label if it is correct - disability is nothing to be ashamed of for me, so my reluctance is nothing to do with that!

You have a disability as your body doesn't work the same as a non disabled person and you need specific aids to live your life. Declaring a disability protects you.

I'm autistic with ADHD. Mine is classed as a disability, which it would be if I didn't have reasonable adjustments at work. I just see myself as differently wired.

I guess I’m disabled because I am very deaf and it impacts (often badly) on my day to day life?

Yes you have disabilities. The fact you have medical aids (stoma and osteomy bags) doesn’t mean you no longer have disabilities. No different from someone who walks around with an oxygen canister and breathing tube, or a person with a pacemaker for their heart, etc

There is a difference between having disabilities or disability and being disabled from what I gather. You can have disabilities and not be disabled, but to be disabled you must have at least one disability.

I think disabled is where even with aids, your disability/disabilities still affect your day to day life in a way that makes it harder than for an abled person such that you need additional support whether that is regular medical appointments all the way up to a live in carer.

It sounds like you were so used to the changes to your life before the ostomy that you regard it as easy to manage. A bit similarly, I have a minimally functional arm and have struggled to describe that meaning I have a disability - if I had it amputated (which is a viable option and would mean I have more function with a prosthesis) I would find the description easier even though I had less pain and more function.
So, if I were you I'd say yes to both

You are disabled (or differently abled if you prefer different terminology) and I would say yes that is absolutely the correct terminology in terms of both affecting your daily life and the general question of having a disability.

my DS has a neurodivergence and is labelled as having ASD and a disability by the nhs. Your day to day life is massively more impacted by your disability than my son and his disability and his day.

i have had CFS for a very long time but for most of it ,it hasn't been disabling ,i have been able to attend uni ,work etc- however now it is disabling in that it impairs my everyday function/activities and stops me working - however i still don't describe myself as disabled, but that might be more of a psychological issue. I had reason recently to make a complaint at my local supermarket as they've stopped staffing the tills at a certain time in the evening (with the expectation that everyone uses the self-service) and they were very unhelpful & 1 person was rude when I said I struggled to do this. Its the first time i have EVER felt disabled as it has meant that i have had to change my shopping time to avoid this situation again. Perhaps it depends on how you define disability ( and perhaps for what purposes they are collecting data - for eg. for you having access to hygienic toilet facilities in case of stoma problems might be important, so in our area, the fact the have closed many public toilets, means for certain people this could affect them going out.)

@volunteersruz
Thats a good point about public toilets because social factors can affect whether your disability is more or less disabling.

Ah thanks everyone - really helps to have some external thoughts. Yes - I guess I was so used to life before that it's hard to see it as an impairment now! My disability has played a (positive) significant role in my life (e.g. helped to change my workplace culture) and is likely to carry on doing so, so it's been a bit of a minor 'identity crisis' (although that's really too strong a term!) despite the fact I'm grateful every day for the life I can live now.

Disability is such a subjective and socially-loaded term isn't it?! I completely get those who do not wish to be defined as 'disabled'. I think that's why forms usually ask if you have an impairment, etc, and then also ask if you consider yourself to have a disability. There is also such a range of different reasons why we can be 'disabled' or excluded by our conditions - often it's the society/environment we're in, sometimes (like me) it's medical aids/treatment or lack thereof, and sometimes it's just the stigma of being 'different'. Totally identify with the feeling more 'disabled' in certain environments. I'd have been unable to work at many points if I'd been in a different profession.

Feel like forms should first ask:

1. Do you have a physical/mental/neurological impairment OR difference (regardless of how it affects function / whether you personally see it as a negative, etc) and THEN:
2. To what extent does it affect your day to day functioning (you could then grade this in terms of 'severity' and also answer with/without medical aids, with/without RAs.). But that's probably overthinking!