Marianne Stevelink, advocate in Borne: “You shouldn’t beat a dead horse”

In 2002, Marianne Stevelink was diagnosed with MS. At first it didn’t bother her that much, but slowly but surely she deteriorated further. She has now been in a wheelchair for several years. Since then she has experienced that people in wheelchairs are hardly taken into account in Borne. She uses her experiences to take accessibility and inclusion in her hometown to a higher level.

Lift

Her first successful action was arranging a lift for the swimming pool. That was before the foundation was established. Marianne: “In 2019 I went swimming regularly. Initially I was still able to get in and out of the water with a lot of hanging and strangling. But at a certain point that was no longer possible. I really needed help. And yes, then I thought: Why is there no lift in this swimming pool?”

“They were still talking about a hoist
never thought: ‘are we of that?’?”

Marianne was already familiar with the UN Convention on Disability. “According to the UN treaty, a swimming pool must also be accessible to people in wheelchairs. I explained this to the swimming pool manager, but he said: we cannot arrange that, it has to be done through the municipality. I went to the municipality, first to an official, later also to the alderman.”

“The municipality had never thought about a hoist for the swimming pool. ‘Are we of that?’ they asked. ‘Yes!’ I said, pointing to the UN treaty. Yet they found it a difficult subject, because I was the only swimmer in a wheelchair in Borne.” Marianne makes it clear that this is of course a matter of supply and demand: if a hoist is introduced, more people with difficulty walking will come to swim. But it remains difficult. Marianne: “The problem is that the municipality does not feel primarily responsible.”

Ultimately, she gets the municipality on board, and a sponsorship campaign is set up together. And after more than 2 years, there will finally be a lift in the swimming pool.

Foundation in formation

By that time, Marianne and a number of other volunteers are setting up the Borne Experiential Experts Foundation. Even before the official foundation, they are already making themselves heard. “The municipal elections were coming up. We then sent an email to all political parties with the question: as a foundation, we would like to know what you will do about accessibility and local inclusion during the coming Council period. We received mixed reactions.”

“We have also asked all groups to be allowed to come to the group meeting to explain why the UN Convention on Disability is important. We made a film about what it is like to drive through Borne in a wheelchair. We sat with the councilor and looked up the newspaper.”

The actions have an effect. The official establishment of the foundation in mid-2022 will be widely reported in the local news. Marianne: “And then the ball started rolling.”

Doorbell action

In October 2022, they will organize a striking action in the center of Borne during Accessibility Week. The campaign not only generates attention and better store accessibility, but also awareness among retailers and the public. And also fame and goodwill for their own organization.

“We did take the doorbell campaign
a financial gamble”

“Retailers closed their doors due to the energy crisis. We understood that, but it is very difficult for us to get in. Then we got the idea for the doorbell campaign. We bought a batch of wireless doorbells and had stickers made with the text ‘Press the bell if you need help opening the door, we will help you as quickly as possible’. We started offering those doorbells and stickers to retailers. Can we hang this up? Well, almost all retailers were fine with that.”

The fact that the campaign attracted attention was partly thanks to a smart first move. “We asked two shopkeepers we knew personally: can we hang your first doorbells? They were fine with that. And we included the local newspaper and TV.”

No subsidy

“We took a financial gamble with the doorbell campaign. We do not receive any subsidies. The printer was willing to make the stickers for us pro bono, but we had to buy the doorbells ourselves. In the end it worked out well. Retailers did not have to buy the bell from us, but we did ask for a voluntary contribution. They could choose between 15 or 50 euros for a sponsorship contribution and their logo on our website. A lot of stores paid a lot more, so we ended up doing well financially.”

“You can have a conversation with us
don’t refuse”

The fact that the foundation does not receive municipal subsidies really bothers Marianne. “The municipality must actually organize the input of experiential expertise itself. We have now done that for them. And we really reach out to them a lot. We provide advice and organize meetings with experienced experts. We take a lot of work off their hands. So it would be nice if the municipality would support us. But our subsidy application was simply rejected last year; was not considered necessary. Then any club can apply for a subsidy, they said. That stings.”

Come to the table

Even though their work is not recognized in the form of a subsidy, the foundation does manage to come to the municipality’s table as a serious discussion partner. “We succeed mainly because we don’t wait. We simply say ‘we want a seat at the table as a foundation’. And in the beginning we really enforced that. Then we said: ‘You can’t refuse to talk to us. And what also works well is simply asking: Can’t I participate? No one dares to say no to that.”

“So you shouldn’t wait. We recently received a call from a worried lady. Her husband has acquired brain damage and therefore has problems walking. She told us that her neighborhood is being redesigned, but that the residents’ working groups do not think about accessibility at all.

“Some residents said: we can
not taking everyone into account”

We then simply called the councilor and said ‘We want to sit down with the project manager and the residents and discuss the entire accessibility story’. Well, then a number of ideas came under pressure. That was really hard for them. Some residents said ‘we can’t take everyone into account’. And the project manager also found it very difficult. But we just persevered. It’s not completely finished yet, but we’re on top of it. And it was of course also very painful for the municipality to see that they had not initially taken accessibility into account.”

Apparently normal

Enforcing involvement is no longer necessary so often. Yet it remains surprising to Marianne that so little attention is paid to people with disabilities. “No one feels responsible for the fact that people with disabilities cannot participate in something. That is apparently very normal.”

“Would it be about a student of color,
then the Netherlands would explode!”

“Some time ago it was reported in the newspaper that a student had to give up her Astronomy studies because she could not get into the practical room with her wheelchair. So it is in the newspaper, it is read, but no one is concerned about it. If the article had been about excluding a student of color or a student wearing a headscarf, the Netherlands would have exploded. Then the councilor or the rector of the university should have immediately come to Op1 in the evening to provide an explanation. But when it comes to a woman in a wheelchair, no one needs to come and explain. When it comes to disabled people, it remains silent. That touches me terribly!”

Regional and national collaboration

The Foundation for Experienced Experts for Handicap Borne focuses primarily on Borne, but Marianne consciously looks beyond her own municipal boundaries. Because what happens in Borne also happens in Enschede, or in Hengelo, and vice versa. “I want to join forces and establish a group of experienced experts from Twente. How wide a sidewalk should be or where the guide lines should be is the same in every municipality. The first steps for regional cooperation have been taken. We have already met with a number of clubs.”

“And we also consciously seek connections with larger national parties, especially because of the knowledge they have in-house. That is why we have become a member of Elke(in). We receive information about national developments through Elke(in). That’s nice, because we can’t keep track of everything ourselves. And it’s nice to be able to discuss this. And through the Elke(in) network we also come into contact with other groups; also around here.”

In addition to information, Marianne also hopes to receive some support from Elke(in). “Especially with things that are difficult for small local organizations like us.
For example, collecting information from our supporters. We would like to be able to use a website or something that would allow us to send out surveys and allow us to easily collect and analyze the results. We cannot achieve that ourselves. For this you have to hire an expensive agency. And if you don’t have a subsidy, that’s difficult.”

“Choose one or two things
where you think: this is going to work”

“And it would also be nice if someone from Everyone could think along with us about what is important to ask your supporters. I think this is especially useful for smaller, local organizations. Large patient associations have managed that, they have completely different funding flows.”

Tips

Marianne does not have to think deeply about whether she has any tips for other local advocates. She immediately starts: “Choose your battles.” Choose one or two things that make you think: this will work. And be happy with that. Everything else will come. Or not. If you think ‘I’m flogging a dead horse’, just leave it alone.”

“That also applies to politicians. Some politicians you like, and others you don’t. I have a number of parties in the municipality that I have no contact with. They just really don’t want to. Fine. Don’t worry about that, it only produces negative energy.”

“You certainly shouldn’t contact the municipality
ask if it is allowed. You just have to do it”

“I look for things that give me energy. Last week we did an experience tour through Borne. That’s nice. Speaking at a Council meeting is good. A doorbell action like this is fun. And if you want to take such an action, you should definitely not ask the municipality or the shopping center manager if that is allowed. You just have to do it. You have to inform them, but just go out.”

“If people want to know more about our activities, for example the doorbell campaign, they can always contact me.”

Email: [email protected]

The Handicap Experience Experts Foundation is a member of Elke(in)