Accessibility is something that those with an invisible illness can find challenging. Whether it be accessing a building, funding, benefits or services online, for me it can feel exhausting that you have to prove it constantly. All too many times in the ostomy community, we see stories about ostomates who have been denied access to leisure facilities, or questioned for their use of disabled toilets. Narrow mindedness comes to mind...
Accessibility can impact a person in dramatically different ways according to their needs and conditions. What one person sees as easily accessible, can seem impossible to another. It is hoped that for something to be accessible that it empowers and assists the person to use the facilities as much as someone who doesn’t have needs. It can never be one size fits all, but it is hoped that a broad spectrum of users is considered. Those that can not be catered for should have an alternative that gives them independence, allowing them to gain what others will from use of the service/product in question.
Accessibility and ostomies
Where ostomies are concerned, some don’t feel the need to use disabled toilets and others do. Many have secondary needs as well as their ostomy. Some such as myself have children that have them too where they need a carer to assist them with toileting, making standard toilet facilities impossible to navigate. In the event of a bag leak and an urgent bag change needed, standard toilet cubicles don’t allow the space needed to comfortably change a bag.
Talking to Carl, who has Thrombocytopenia-absent radius (TAR) syndrome
I wanted to see accessibility from another person's perspective, someone who has different needs to mine, with the view of delving into what services and businesses could do better. Carl is 40 years of age and was born with the condition Thrombocytopenia-absent radius (TAR) syndrome. It is a rare disorder that is present at birth. It is characterised by low levels of platelets in the blood (thrombocytopenia) and absence (aplasia) of the long, thin bones of the forearms (radii).
Carl graciously shares his experience with accessibility:
During the course of our lives we all encounter challenges and hardships, sometimes severe. People with disabilities can experience these difficulties on a more frequent basis, and find that these challenges have much greater short and long term impact. The challenges faced by people with disabilities do not just involve physical obstacles.
You have to factor in a person’s environment, limited functioning and their disability. These include aspects such as a physical environment that is not accessible. For someone like myself stairs and steps outside a shop or a place that has no lift would cause me a lot of issues. The lack of relevant assistive technology really hinders me a lot.
You also have the negative attitudes of people towards disability, services, systems and policies that are either nonexistent, or that hinder the involvement of all people with a health condition in all areas of life. I've had numerous occasions where people would just stop still and stare. I'm used to it, but I could imagine others being really put off. This then gives them a negative attitude in accessing some of these places in the event of this happening again.
I consider myself very lucky that I am very stubborn and have a can-do attitude. Growing up I was able to try things and look at ways of adapting and using my own ideas on how to overcome things. With me having very small arms, I cannot reach to put my socks on so I use my feet to do it. Washing certain parts of my body is difficult, but you can buy long handled bathing sticks that assist you. Getting clothes on, especially the lower half of my body can be tough, but again you adapt and overcome. I have a few different items that assist me including sticks with hooks on the end so it helps pull jeans with loops up. I'm also lucky to have a great family network and some great friends that constantly push me to overcome and not give in. I truly believe there is an answer to every problem.
My thoughts on Carl's story and accessibility
What I find most inspiring about Carl is his refusal to accept limitations and give in when he encounters difficulty. Where accessibility and being an advocate for yourself is concerned, I believe the only way forward is to have the same attitude and not give in and find ways around difficulties. Unfortunately, we live in a world where people are still ignorant to differences. Experiencing stares in the street is not pleasant, and it is a very sorry state when an individual is simply used to it, not because of a positive reason, but because they haven’t had a choice. What shocks me the most is with all the technology we have, we still have buildings that don’t have access for the physically challenged. I have had to walk out of baby groups with my son as they only had standard toilet cubicles which were not usable when changing a stoma bag. When buying tickets for a theme park, I have had to ring and ask about toilets and access. Why isn’t this made clear on the website? They advertise extortionate add ons to tickets that none of us really need for pure profit, which with the time used to create the content would take longer than adding a paragraph on accessibility!
An ostomate in my position and someone with Thrombocytopenia-absent radius (TAR) syndrome will encounter very different difficulties when it comes to accessibility. Radar keys and a blue badge for parking are one thing, but it is those such as Carl that use their own adaptations that are the real trail blazers here.
Wouldn’t it be wonderful if the intended users had a part to play in the designing of public services? What would you change? Let me know in the comment section and join myself and Comfizz in starting the conversation. Every change starts somewhere. Thank you Comfizz for giving me this platform to share peoples stories and start a conversation. Finally a big thank you to Carl for being so open and honest.
Disclaimer: As always, this post is from our blogger, Rachel's, experience of living with an ostomy & Hirschsprung's Disease & from what she has researched. Nothing in our blog posts should be taken as medical advice. It's always best to consult a medical professional if you have queries or concerns.
Other reads by Rachel:
- Can you go to a spa with an ostomy?
- How long should an ostomy bag stay on?
- How can I prepare my child for going back to school with a stoma?