Disabled people still feel like second-class citizens in EU

Would my wheelchair, the guarantee of my independence, arrive intact? Many don't.

It was the cherry on top of the inaccessible cake that was COP27. My frustration grew about the 'price of inclusion', the price that disabled people pay to participate, to have a voice.

We put our health, our income and even our lives on the line just to do things that non-disabled people take for granted and don't even give a second thought about.

I paid a heavy price to try that disabled people are not left out of climate policy.

When I arrived, the back of my wheelchair was broken. I could not sit. I was stuck laying down in my wheelchair. I could not see anything. I could not manoeuvre my wheelchair. Just to be taken home in a taxi, we had to improvise support with my luggage — dizzying and dangerous. My independence was taken away and I had to pay to get it back.

Indeed, EU law allows airlines to treat wheelchair as lugagge and limits airlines' legal liability to under €1,500 — or disabled people pay a surcharge to create a "Special Declaration of Interest" (I was once quoted €890 for a round trip). It is left to disabled people to cover the rest.

So, I shouldered the cost and hoped for reimbursement — which I still haven't received.

But I didn't have the "luxury" of having "only" this heavy burden in my mind, because I was worried about my trip home. Brussels' lack of accessible transport left me at the mercy of the scarce wheelchair-accessible taxis that exist.

If the driver left, the wait for another would be more than two hours. And if I make him wait longer than the agreed time, I pay for every minute I am late.

How would you feel if you had to face an obstacle course every time you leave the house, for which the price of failing is your income, your independence… or your life?

The EU is going to revise the Passenger Rights Regulation — and its rules are still very far from reality. It will also launch the AccessibleEU Centre and propose expanding the European Disability Card. There is an opportunity — these three initiatives must give me more freedom. The EU must ensure that I have the rights they like to tout about — freedom of movement, equality, and protection.

But freedom of movement is only one of the myriad of problems we face.

Imagine going to the doctor — a nerve-wracking experience. I jump through hoops, pay more, and spend more time just to reach their office.

And I often arrive to discover it's not accessible. I must explain myself repeatedly — and ask for the support I am entitled to. To no avail, as sometimes the door is not even wide enough for my wheelchair.

And if I manage to meet the doctor, issues arise. When I had surgery on my leg, I went to the cardiologist to ensure I could take anaesthetics. But he couldn't administer even half the tests he was supposed to. I could not do the exercise test — how do I use a treadmill? He could not even stick adhesives to measure my heart rate. I risked my life by taking the anaesthetics despite that it will be based on his estimation / assessment.

The life of disabled people is asking, asking, asking, and explaining, explaining, explaining, just to receive a sliver of our rights. And that's for those that can.

Because many disabled people can't. They can't because they don't have ways to communicate accessibly — they don't have tools to be understood. They can't because they are not made aware of their rights — it's not a priority for governments.

They can't because they live segregated in "care homes", places over one million disabled people are "warehoused" and told what to do and when, where they are neglected and abused. These places are often supported by EU funds — constructed with them. With funds that support human rights abuse and mock the UN Disability Rights Convention ratified more than 10 years ago.

The EU likes to tout itself as the "Union of Equality" and a "defender of human rights", but that is not true for disabled people. Inaccessibility, exclusion, and discrimination are the reality.

We are denied our EU citizenship — considered second-class citizens without the rights the EU promises.

This won't change until the EU fully implements the UN Convention on the Rights of Persons with Disabilities. Not until transport, housing, education and all places in the community are affordable, accessible and inclusive.