Fuchsia friend

Magdalena Keler: Ania, Renata, Jolanta, Aneta, and Kamila are the participants of the “Fuchsia Lady” project. There is a reason I am starting this conversation by mentioning their names. People with disabilities are most often invisible in our country.

Marzena Urbańczyk: And this invisibility is multi-level. From not recognising their gender, through a painfully impersonal approach, to treating them almost like air.

Many of us do not address people with disabilities as you, sir or madam, but simply by their first names, and most often their names are not even remembered, because we address their caregivers directly. This approach can be seen especially in doctor’s offices. Patients with disabilities are reduced to the role of mannequins who have to sit on the gynaecological chair. There is no room for any intimacy there.

Society treats people with disabilities like big children.

M.U.: But this “big child” is, for example, a twenty-something woman who has her period and should undergo preventive examinations. Meanwhile, people with disabilities are simply not discussed in terms of menstruation or sexuality. These issues are as unnoticed as they are.

But the caregivers themselves probably also often perceive their charges this way, for them they are “eternal children” for years. And it is very difficult to talk about what is happening to the body without the support of loved ones.

M.U.: Caregivers definitely contribute to this, but we also can’t blame them all. Because if a caregiver does not receive systemic support, how such a process of education is to be carried out beforehand, then it is very difficult for them to deal with this topic later. After all, even for a large group of parents with able-bodied children, talking about sexuality and puberty is also not easy. And what about when we have to explain these phenomena to a person who cannot make any decisions about themselves.

In the case of women with disabilities, it is a simpler solution for caregivers: it is easier to change a sanitary pad on your own than to teach them to self-service.

But, in fact, many parents unfortunately have a tendency to take care of things for their children. And parents who do things for their children take away their autonomy.

Agnieszka Gentsch-Piasek: I think that the problem also lies in the generational taboo. While, together with the authors of the “Fuchsia Lady”, Weronika Ceglarek and Wioletta Jamróz, we talked to mothers of women who participated in testing innovations – and these were ladies from the small town of Koło and the surrounding area, some of them over 60 – they told us straight that they did not know how to talk to their daughters about it, because no one had had such conversations with them before.

The effect is that women with disabilities often do not know what is happening to their bodies.

A.G.P.: Hence the fear. And the idea for the “Fuchsia Lady” project came from this anxiety.

The problem was diagnosed by Weronika Ceglarek who noticed a certain regularity during her classes – the cyclical absence of participants. These women disappeared regularly every month for several days. Weronika guessed that they were going through menstruation at that time. When, together with Weronika and Wioletta, we started talking to their caregivers and the participants themselves, it turned out that the absence from classes was due to fear. They were simply afraid to leave the house during their period. The taboo of menstruation was deeply entrenched in them. These women were afraid to openly admit: “Today I’m on my period,” they were afraid to leave the house, because the sanitary pad would leak, because the clothes would get dirty, and they would not be able to change them. So they decided that it would be easier to stay at home, where no one asked questions and they could wait out their period in peace. The house turned out to be the safest for them, it was something they knew and understood.

And in this way, for these few days a month, they became completely socially excluded.

A.G.P.: When we count the time from puberty to menopause, it turns out that, on average, we menstruate for a total of seven years in our lifetimes. And in the case of women with disabilities, the consequences of this closure to the world are much greater than in the case of non-disabled women – contact with their peers is limited, they do not take part in rehabilitation activities, in events intended for them. It should also be remembered that each absence from occupational therapy workshops is a pay reduction, so this monthly absence also has economic consequences.

What other problems do women with disabilities face during menstruation?

A.G.P.: Some of them may be more affected by the effects of menstruation due to concomitant diseases or medication, they are also more prone to irregular menstruation and severe pain.

The problem is probably also incomplete physical fitness?

A.G.P.: True, muscle spasticity can make it difficult to change personal care products. But of the five women who participated in the tests under the project, three had no problems with it. What was a real obstacle for them was the lack of skills in managing menstrual hygiene. The authors of the innovations had to find a way to remind them of the necessity to change the measure. Testing under the “Fuchsia Lady” proved that even women with a significant degree of intellectual disability can achieve independence in terms of self-service during menstruation.

How was that possible?

A.G.P.: It turned out that we don’t have to perform miracles at all to face all these fears. It was enough for the innovators, Weronika and Wioletta, to create a special relaxation corner during the workshops – a place where the participants could lie down at any time, calm down and, if necessary, listen to music. The corner was separated from the rest of the room with a screen to ensure as much menstrual intimacy as possible. The participants very often used this place and – most importantly – decided when to go there and when to return to classes on their own.

Electronic watches with built-in functionality of multiple vibration and sound alarms reminded us of the necessity to change a sanitary pad.

The third element was the picture instructions that reminded you step by step about the activities necessary during menstruation.

Of course, it was also very important to involve the therapists in the whole process. They constantly emphasised their readiness to help, so the participants had no hesitation in asking for it.

And where did the name “Fuchsia Lady” come from?

A.G.P.: The authors of the innovations really wanted the name not to be stigmatising in any way, but also to be feminine. Since both the participants of the program and the therapists involved in it like this colour very much, it became fuchsia. All elements, including the relaxation corner, are designed in this shade. The watches I ordered were also pink.

The girls hoped that they would be able to design a special bracelet to emphasise the subjectivity of the participants and their femininity, but unfortunately it turned out that it was too time-consuming and expensive. Therefore, we opted for a ready-made solution in the form of a watch model already available on the market. Fortunately, it has been fully accepted. The participants wore them with pride, they were a symbol for them that the time had come when they would be surrounded by greater attention.

Will it be possible to use fuchsia infographics more widely in the same way?

A.G.P.: The infographics should always be “tailored” and adjusted to the level of communication that is most readable for a given person with a disability. The ones that were used during the testing of the solution in the occupational therapy workshop in Koło were ideally suited to the needs of its five participants.

It seems to me that every parent can create such a graphic at home. After all, it is the parent who knows best which symbols are legible for their child and how they communicate on a daily basis.

M.U.: The most important thing is that the solutions proposed in “Fuchsia Lady” are actually very simple. Creating a corner, boards with instructions or buying a watch are not high costs and do not require a lot of work. All this should therefore be spread from the bottom up.

And is there a chance to go with the “Fuchsia Lady” to other places?

A.G.P.: On a national scale, it is the Ministry of Funds and Regional Policy that selects specific projects, which it implements on a national scale. But we don’t treat any of our innovations as ending at any point. Constant dropping wears away a stone and this grassroots work mentioned above is undoubtedly the most important. Therefore, at seminars, meetings and forums for staff working for people with disabilities, we inform about the good solutions developed by us and encourage them to implement them.

M.U.: The “Fuchsia Lady” has officially visited Śrem. There will also be a relaxation corner, infographics will be prepared, watches will be purchased, and educational workshops will also take place.

Where can a caregiver who would like to help in learning independence for their charge turn for help?

M.U.: It is very important to de-institutionalise the system we currently have in Poland, and we are all very much looking forward to it. Because we should turn to a specific person, not an institution, for help.

Unfortunately, due to the very wide range that we are observing in the area of intellectual and motor disabilities, no one will formulate a single, universal recipe for talking about menstruation with people with disabilities. But what we would like parents to remember is the fact that a child is also a human and has dignity, has a need for intimacy, but also for independence.

The stories of five women from Koło prove that these people can learn to function in a completely new way and in a quality new to them. Imagine someone changing your sanitary pad each month. If there is a chance to gain independence in this activity, it is a great change and a big step towards intimacy.

And this is the great value of our project – a change in thinking that it may be different. Even if not one hundred percent, maybe at least half.

A.G.P.: We understand that we are not building the world anew with this innovation. But it equips the system with a tool to make it work better. We want to open the door to changes.

These five women are a great success.

A.G.P.: For one of our participants, 26-year-old Kamila, who is a person with autism, these six months of the project turned out to be too short to implement changes. Perhaps in her case it would be necessary to individualise the whole process even more. Perhaps there will be groups of women who will require such more individualised paths. But the direction has been set and this base, which was established in Koło, is very promising.

The authors of the innovations – Weronika and Wioletta – proudly informed us after the end of the testing under the “Fuchsia Lady” that three of the five participants began to appear full-time at the workshop, where they had previously been absent regularly every month. Maybe this scale seems small, but for us it is a great success for this project.

I remember that when we talked to the mothers of the participants at the beginning of the innovation work, they emphasised that they regretted not having received such support earlier. Perhaps then they would have dared to introduce changes earlier, but after years of functioning according to specific rituals, it was very difficult for them to get out of the comfort zone that they set out for themselves and their charges. Caregivers of people with disabilities also say that they are aware that one day they will be gone, and they care very much for their daughters to be as independent as possible.

How was the project perceived by the participants themselves?

A.G.P.: They were very involved in the whole process. We tried to make the women feel that, together with the authors of the innovations, they are working out a solution that will someday serve other women, also in need of support at that time. Once they knew that the period is no secret, that we all know there are days when we may feel worse, they also supported each other in the process. This project triggered a huge willingness and readiness to support each other.

This opening up to physicality and its various aspects is also the basis for breaking the taboo that has grown up around menstruation.

Is there hope for change? I honestly admit that calling the “Fuchsia Lady” an innovation raises my anxiety and objection.

A.G.P.: In terms of menstrual service, in fact, the word “innovation” sounds absurd and completely out of place. I am ashamed that in the 21st century the subject of menstruation requires such measures.

I hope that a generational change will help to change the reality in which we live. We meet many caregivers at work who fight hard for the subjectivity of their children, for their dignity, for access to all services, these are parents who, even if the system does not allow it, will knock on the door for as long as it takes until it opens. And we will always support them in this fight. And in breaking taboos, too. Because we women are more and more aware of our rights, we have stopped hiding behind men, we are rejecting shame.

M.U.: We have to change the way we think, this is the key to change. I am sure that we will get to the point where the innovation will be a standard.

Let us remember that it is people who change the world, not the system.

 

Agnieszka Gentsch-Piasek – a sociologist by profession, for several years she has been coordinating partnership social projects related to social inclusion. Head of the social innovation team at ROPS in Poznań

Marzena Urbanczyk – specialist in supporting people with disabilities, works at the Regional Centre for Social Policy in Poznań. Advocate for the rights and dignity of people with disabilities

Author:  Magdalena Keler

Ilustration: Marta Frej

The text was published in „Wysokie Obcasy” a magazine of „Gazeta Wyborcza” on 14 August  2021