Resiliance and Disability - a blog post by disability advocate Carolyn Akintola

Carolyn Akintola is from Dublin. She was one of the DFI delegates attending the Fifth European Parliament of Persons with Disabilities on 23 May in Brussels where one of the themes discussed was disability inclusive resilience. 

My name is Carolyn. I am a wheelchair user due to having Ehlers-Danlos Syndrome. I dislocate joints, tear skin, and have heart, respiratory and digestive issues, Degenerative Bone Disease, and Chronic Pain due to this condition. I also have Asthma, COPD, and multiple life-threatening allergies. I use an electric and a manual wheelchair,  rollator, rise and recline armchair, electric bed, air alternating mattress (to reduce the risk of pressure sores), so my needs are pretty significant.

Whether it's trying to gain equal access to transport, public and private buildings, or the basic services I need to function as a disabled woman, I, alongside many others in similar situations spend a good part of my life in one conflict or other with 'the powers that be'.

Home Help Service to assist with cleaning my home? - Battle lost! No chance! The only assistance I may get if I plead carefully enough is with Personal Care. That's not what I need assistance with. I need assistance with housework. Why can't I have the support that I need, not what somebody else thinks I should need? Why on earth should it be acceptable to have a clean body, but live in squalor?

Full Medical Card? Battle finally won! I got it after three hellish months without it. The stress of that particular battle could have driven me over the edge. It was terrifying! If stress burned calories, I'd be a super model!

Need to access a train in Ireland? I have to book at least 24 hours in advance and hope that the station is manned and the ramp is at the ready. That applies at the beginning and the end of every journey.  Oh, and allow extra time in case you're put onto the wrong train! Yes, I can attest through personal experience, it does happen! So someone like me, getting to make that spontaneous decision to take a train on a given day? Don't be silly!

Spending time as an in-patient in any of our public hospitals in a six bed-room is interesting. What about space for my wheelchair and rollator? Nope! Space in the bathroom in the ward for independent use? No chance!  Permission to have a friend remain and assist in the way I need, not in what someone else decides I should need during my stay? Dream on! Be able to get into, and close the door of the x-ray changing area without giving other people an eyeful? No way! Well, don't worry, the back opening gown is very fetching! 

I mention the above not to complain, but to illustrate how 'services' for people with disabilities are often totally inappropriate, if they exist at all.

All that being said, let's mention a few services that do work, at least for me, because I can access them through the HSE's Disability Services. Occupational Therapy, Physiotherapy, Special Care Dentistry, Podiatry, have been made available to me, albeit with long waiting lists. I have learned to 'navigate' the Disability Service, and can, with a few blips and hiccups, make it work for me.

My big worry is that I am now pretty close to my 59^th birthday, a milestone that no-one ever expected me to achieve. I like to think I am far too stubborn to die young! If I have the good fortune to survive to age sixty-six I will, according to all the service providers, no longer be disabled! I will no longer be able to access Disabled Services. I will then need to switch to Older Persons Services. I will have no choice in the matter. It means that according to those who provide services, on the day before I turn sixty-six, I'll be disabled, and the day after I will not be. Someone declare the miracle!

Why should this be? What works for a sprightly older person may not for their significantly disabled counterpart. Older People who are also disabled are 'falling through the cracks'. Why can't we, at any age access a Personal Assistant Service that suits us? One that meets our needs, where the person with the disability leads the narrative.

Everybody I have spoken with about what support I can expect if I live to sixty-six but need more assistance talks about a 'Homecare Package'. This will involve a 'carer' calling to my home every day, at a time of the system's choosing, providing whatever service the system thinks I should need to provide and only within my home. Somebody coming to my home at the same time every day, to so the same thing, at the same time, for the rest of my days - I can't think of a worse situation.

In my opinion, we as disabled people need to be included from the very beginning in the planning, implementation, and provision of Disability Services which reflect our needs, wishes, and our human right to fully participate in, and contribute to society. Ageing will certainly not make having a disability easier, but it shouldn't make it harder. We are all human beings, with the right to live as we choose to do, to have our needs met in a manner that respects our autonomy, and our dignity. Nothing about us without us!

Carolyn Akintola

The photo used shows Carolyn with a Budget 2024 hashtag sign with a quote from this blog post beside the image.