Karsten Lippmann is Chairman of the ABiD Institute for Disability & Participation (IB&P), an affiliated institute of ASH Berlin. On the occasion of the World Day of People with Disabilities on December 3, his contribution deals with the importance of physiotherapy for this group of people, also with a view to the future of the courses offered for occupational and physiotherapists at ASH Berlin, and he gives an insight into his personal experiences as a severely disabled person.
"Your university," she said with a laugh, "also trains physiotherapists. Congratulations!"
"Who does what?" I asked. I wasn't quite awake yet, as I sometimes am shortly after eight in the morning. - But that's not really necessary. She had just entered my study and I had already laid down on the floor.
It's been roughly the same routine for decades, at roughly the same time. Only the therapists change, rarely, but still more often than I would like.
"What are we doing today?" she asked. - "The right arm is particularly spastic. A lot of writing."
"It's your own fault," she sighed, slightly annoyed. "I've told you so many times ..."
"Don't grumble, move through, please," I interrupted.
"That's a shame," she replied, "I can move through and grumble at the same time. That's multi-tasking." She started with small movements of my arm and changed the subject again: "Anyway, I've been reading up: Your Alice Salomon University also offers a degree program for physiotherapists as a part-time bachelor's degree. That sounds interesting. Maybe I'll apply."
I slowly woke up. "First of all," I said, "it's not 'my' university. I'm just the chairman of the ABiD Institute for Disability & Participation. This is an affiliated institute of ASH Berlin. And the chairmanship is an honorary position."
"Well, all the same."
"Yes, I know, I'm a lucky man. - But secondly, you're already a physiotherapist. Or should I have asked to see your certificates?"
"I can bring them to you next week. - But seriously, the course is about other things. Modern physiotherapy is also about management and representing interests, e.g. in associations and chambers ...
"...which you've often gotten upset about here ..."
"... And with my degree, I could then work myself so that other people would get upset with me."
The movements of my arm got bigger. "If it hurts ..."
"... Then it serves its purpose," I interrupted her with a smile.
"But stop this nonsense," she admonished me, a little too seriously for my taste. "I completed my apprenticeship in 2018, not 1850! If stretching really hurts, it's no good at all."
I sighed, only half-jokingly: "It must be these modern times everyone's always talking about."
At that moment, I remembered that I have now been a permanent physiotherapy patient for 45 years. I am just over 46.5 years old. And the 1.5 years difference between the two was not a happy circumstance either, quite the opposite: "Perhaps we could have done more if we had at least been told what was going on straight away," my parents still sometimes say regretfully today. And medicine proves them right: brain damage, especially in early childhood, should be treated as soon as possible in order to limit the consequences. There's certainly no mention anywhere of letting families stew for a year and a half in a state of consolation and then, after one of the many visits to the doctor, sending them home with a brochure so that they can read up on what might be wrong with their child ...
My medical history is not really exciting because it is the "classic" one of spastic quadriplegia: lack of oxygen during the birth, which took place a month too early. As a result, a spastic paralysis "as it is written in the book" and, this is the interesting point here, 45 years of physiotherapy "from the patient's point of view", three times for life. I hope that another two to three times 15 years will be added. Because, despite all the difficulties, all the criticism and all the sarcasm: I am very grateful to my physiotherapists (they were always women from the beginning) for their dedication. They will probably be with me for the rest of my life, at least as far as the health insurance companies' fee schedules allow.
This is not the only reason why I expressly welcome the fact that ASH Berlin offers a part-time course for physiotherapists in accordance with the model clause: If the opportunities for physiotherapists and occupational therapists to help shape their professional field are improved, this is entirely in the interests of their patients. As a first step, access to the degree program should therefore be kept open beyond 2024 via the model clause. In the medium term, it is recommended that this attractive and important course be incorporated into the ASH Berlin curriculum.
It will come as no surprise to anyone that "my first time for life" in physiotherapy was the hardest. Should I and do I even want to write about it? - Perhaps most likely about Mrs. J., my very first physiotherapist. I don't remember her at all, or only indirectly: my mother took me to see her at the time. My mother is a very friendly, warm-hearted person, but not really a sentimental one. But even today it can happen that she accidentally sees me making movements or movements that suddenly make her struggle with emotion and say: "Mrs. J. taught you that back then. Do you remember?" No, Mom, I was only about two years old. But if it moved you so much, it was obviously important.
And not remembering can also be a compliment. This was followed by a phase of physiotherapy, from which I remember too much: a large hall in the boarding school, pain, tears and the therapists shouting. They were adamant that the treatments had to hurt, allegedly or actually. And they treated it that way. However, the physiotherapy at the boarding school was good. I was later treated there using Vojta, which was very progressive at the end of the 1980s, even internationally. As I was no longer an infant, the debates that still rage today about whether babies somehow suffer from this therapy, as they often cry, were superfluous in my case. I found the treatment exhausting, but also pleasant. The latter because it was always said: "Vojta needs rest." So it was quiet. The therapists, who I usually knew for shouting, which I hated, didn't shout. I can't say for sure whether Vojta therapy had any other positive effects on me. It didn't teach me how to walk. However, I was no longer a baby and couldn't follow the recommendation to sleep for at least 2 hours after each session. I was a pupil. Most of the time I went back to class or did homework. I didn't want to accept any drop in my school performance and it didn't drop. Would I be able to manage today without a wheelchair if I had lived for two and a half years just for Vojta? I have no idea. - But, understandably, nobody wanted to guarantee me that.
It may be frustrating for physiotherapists and healthcare professionals of all kinds when patients don't fully comply with their instructions. But please never forget: a recommendation is quickly made, and if it hasn't helped, this may also be quickly stated. It is the patients who are supposed to change their lives "in the meantime". I could write a lot more about physiotherapy now. About its importance, especially for people with disabilities. About its limitations, in the same case. But I hope my point has been made, my thanks have been received.
The therapists at "my" boarding school were well trained, as I have already written. Their manners improved with the fall of the Berlin Wall at the latest. But not only that: the loudest and most brutal of them was suddenly gone. A lot changed in those years and the disappearance of this woman probably redeemed us all. About 3 years passed. Then I was called out of class and into the therapy rooms. It was very unusual - I thought I recognized her voice from afar. But it was still unusual. She didn't shout. In the past, she had sometimes used this tone because she thought it was funny to shout suddenly. But then she didn't make the quiet sound for more than a minute. Now I had been listening for 5 minutes, undecided as to whether I shouldn't "run away". But I didn't think that was appropriate behavior for an eighth grader. Maybe it wasn't her at all? It couldn't have been. I turned the corner and felt the horror on my face: "Well, someone's happy to see me." She smiled demonstratively. "Not really, Mrs. X," I replied. "Well, well, who's going to be so vindictive? I'm going again this afternoon, I just want to show my colleagues something. I sent for you because we already know each other. "Absolutely," I confirmed, trying to sound fearless. Then she turned to me and was politeness personified: "Would you please ... Yes, thank you very much." Judging by the conversations she had with her colleagues, she now had her own practice somewhere in the west. - Obviously, the parents there didn't appreciate their children being shouted at. We are all learning, for life.
Afterthoughts:
In December 2008, the German Bundestag and Bundesrat decided to ratify the UN Convention on the Rights of Persons with Disabilities (CRPD). There was no real debate on this in the Bundestag on December 4, the speeches were recorded, including the contribution of Dr. Ilja Seifert, founding chairman of the ABiD Institute for Disability & Participation. The CRPD has been national law since March 26, 2009, i.e. for over 15 years. With regard to my contribution, I recommend reading the following articles of the CRPD:
- Article 4(1)(i) - General obligations,
- Article 7 - Children with disabilities,
- Article 10 - Right to life,
- Article 25 - Health,
- Article 26 - Habilitation and rehabilitation.
The last debate for the time being on the reform of training for the physiotherapy professions took place in the Bundestag on 18.10.2023. It is worth reading up on the debate and discussing the arguments put forward there at ASH Berlin, if you like, with me.
December 3: International Day of Persons with Disabilities
Prof. Dr. Sigrid Arnade, Honorary Professor at ASH Berlin, on the significance of the day of remembrance and action
In 2024, the motto for December 3 is "Amplifying the leadership of persons with disabilities for an inclusive and sustainable future"[1], which can be translated as "Strengthening the leadership of persons with disabilities for an inclusive and sustainable future".
This motto was chosen by the United Nations and fits in with the spirit of the UN Convention on the Rights of Persons with Disabilities (UN CRPD)[2], which has been applicable law in Germany since March 26, 2009. The concept of participation of people with disabilities through the organizations representing them already plays an important role in the UN CRPD. The UN Committee on the Rights of Persons with Disabilities, which monitors the implementation of the UN CRPD worldwide, specified its understanding of participation in a "General Comment" in 2018.[3] This makes a very clear distinction between organizations of persons with disabilities and organizations for persons with disabilities. The former, which are referred to as self-advocacy organizations in German, are granted a much greater say than the latter. The motto of this year's International Day of Persons with Disabilities is therefore in line with the spirit of the UN CRPD.
Every year around December 3, the German Disability Council (DBR)[4] invites people to a "World Day Event" at which the current political challenges and DBR demands are discussed. The event is canceled in 2024. Instead, there will be a protest event in front of the "Grundgesetz 49" installation on the banks of the Reichstag for more accessibility and reasonable accommodation[5].
December 3 was declared the International Day of Persons with Disabilities by the United Nations in December 1992 after a "Decade of Disabled Persons". It was first celebrated on December 3, 1993, and has since been observed annually to raise awareness of the needs of people with disabilities worldwide and promote advocacy for their dignity and rights.[6]
[1] https://social.desa.un.org/issues/disability/events/2024-international-day-persons-with-disabilities (30.11.2024)
[2] https://www.institut-fuer-menschenrechte.de/fileadmin/Redaktion/PDF/DB_Menschenrechtsschutz/CRPD/CRPD_Konvention_und_Fakultativprotokoll.pdf (30.11.2024)
[3] https://www.institut-fuer-menschenrechte.de/menschenrechtsschutz/datenbanken/datenbank-fuer-menschenrechte-und-behinderung/detail/crpd-2018-allgemeine-bemerkung-nr-7-zu-artikel-4-und-33-partizipation-von-menschen-mit-behinderungen-einschliesslich-kindern-mit-behinderungen-ueber-die-sie-repraesentierenden-organisationen-bei-der-umsetzung-und-ueberwachung-des-uebereinkommens (30.11.2024)
[4] https://www.deutscher-behindertenrat.de/ID0 (30.11.2024)
[5] https://kobinet-nachrichten.org/2024/11/29/protest-fuer-barrierefreiheit-und-angemessene-vorkehrungen/ (30.11.2024)
[6] https://de.wikipedia.org/wiki/Internationaler_Tag_der_Menschen_mit_Behinderungen and https://www.bpb.de/kurz-knapp/hintergrund-aktuell/301408/internationaler-tag-der-menschen-mit-behinderung/ (30.11.2024)
