Searching for a new energy source

The interview with Joël below was written in 2015 and just a snapshot. Find out on social media how he is doing now. 
Joël Delvaux has a busy life. He works with a Luxembourg trade union, he has a seat in the city council of Luxembourg city.  He never regarded his disability as a too big obstacle and he always found the motivation to put a step forward in life. But, the past three years his life has changed since the death of his wife.  ‘The fire in me is not that alive anymore. I have to find back my motivation I had in the past.’ 
Joël was born with arthrogryposis. Children with one or more joint contractures have abnormal fibrosis of the muscle tissue causing muscle shortening, and therefore are unable to do passive extension and flexion in the affected joint or joints of the body. Because he has never known another physical situation, Joël doesn’t have the feeling he has lost something in life. Nevertheless, the first 12 years of his life his disability took him to another country: Switzerland.
‘There were not many institutions for people with a disability such as mine in Luxembourg at that time. I stayed in a boarding-school in Zurich. The education was special seen my circumstances, but the lessons were based on normal education. Also in Zurich I have had several operations, I got physiotherapy and speech lessons. The reasons why I returned to Luxembourg were diverse. Swiss is an expensive country. Furthermore, the Swiss education system is only in German, while in Luxembourg one is taught in both German and French.’
Returning to Luxembourg did raise a new obstacle: the Luxembourg secondary education system was not adjusted to children like Joël. Therefore, he started to follow a professional education in administration at Fondation Kräizberg. After his study he worked there for five years, 1995 – 2000, in a secured working environment and followed extra courses in information technology and business administration. Then, it was time to make a new step. ‘I didn’t want to stay in the secured  working environment for the rest of my life. I wanted to have a regular job.’ So it happened. His first job was as a telephone operator with a governmental body. Already in 2003 he started to work for  the department for working people with a disability of the trade union OBGL for eight hours a week. From 2011 he has only been working for that department for 32 hours/week.
Much unclear about working status disabled people
I ask Joël whether there are many people with a disability who work in a regular job. The answer turns out not to be that simple. ‘It is hard to give figures. First of all, they are not public. Second, it depends on the definition of disabled people. When one has an incapability to work of at least 30% one is already considered as a person with a disability. Especially peope who do cleaning work or are active in the health care have to stop work at a young age, because of physical complaints. This is thus not the same like the disability of me or you. Persons with a disability like mine mostly work in a secured environment.’
There are attempts to get more people with a disability to work in a regular job in Luxembourg, but the process goes slowly. Joël sees different reasons . ‘People who get physical problems have to accept they can’t do the things they used to do. That’s a psychological process. Employers should adjust working spaces for such employees. They don’t seem very motivated to do that. The government should push more. Although Luxembourg ratified the UN treaty concerning the rights of people with a disability, nothing much happens. Chapter three of the treaty talks about the steps that can be taken to have people with a disability work in a regular job. As far as I can judge, only 10% of the measures in this chapter have been implemented by the government. There doesn’t  seem much interest among employers either. To give an example: each year, there’s a forum for employers and employees with a disability to get to know each other. This forum is never visited very well. I am one of the founders of Nëmme Mat Eis, which means Only with us. On December 3rd, International day of people with a disability, we will sign a document together with the employers and the trade union that must stimulate the employers to hire people with a disability.
‘The last reason is the Luxembourg education system. People who follow special education don’t have the same professional level as non-disabled people. Furthermore, schools are not adjusted to pupils with a disability and teachers are not supported enough to get along with students with a disability. The practical educational system in Luxembourg lays behind with that in for example Great-Britain. When one goes to university in Scotland as a blind person, the guide dog is being taken care off while you follow college.’           
Movement towards more accessibility and inclusion
Although there’s no special law that obliges restaurants, shops etc. to be accessible, the accessibility in Luxembourg city is okay as far as Joël can judge. ‘Public places do a lot to become accessible. Governmental institutions are obliged to be accessible by law when they are newly built or renovated. The city installed a so called participative committee. Its members are all citizens with a disability. The committee gives advice to the municipality about the improvement of  the city’s accessibility. The city also presents the way how people with a disability live to non-disabled citizens.
‘When one looks at the country Luxembourg, one could say there’s a movement towards inclusion. But, the south of the country is going faster than the north. The south has always been the more industrial part of Luxembourg and has always had more facilities for people with a disability.
‘What still is a problem is the public transport system between the cities. As soon as I wish to go from one city to another by bus, I do have a problem. The buses that drive between cities have not been adjusted. One can call for a special service, a mini-bus, called Adapto. It brings you from one place to another. For free, if you dispose of a special card. Otherwise one pays a small sum. It works like a cab. The driver picks you up at a specified time and brings you back home at a specified time as well. It’s not a good solution for me for I feel limited by it. Suppose I visit a movie at the cinema and wish to have a drink with my friends after. I then have to say sorry, because the bus is coming to pick me up. Adapto is paid by the ministry of Transport. In my opinion this expensive service should better be replaced by completely accessible public transport.'
Need for new motivation in life
In 1995, Joël met Andrea. Three years later, they got married. Andrea suffered from Ataxie de Friedreich, a disability that shows itself from adolescence. Its symptoms are a difficulty in controlling one’s movements, difficulty in expression and loss of balance. Andrea died because of it in 2012. Since then, Joël is searching for a new motivation in life. ‘We did a lot together. We were both militants for the rights of disabled people, we went on holidays etc. Since her death, it has been hard for me to find a new motivation. I continued doing the things I already did, but I relinquished starting new ones. Slowly, I now feel it is time to start new projects again. I am thinking of taking a new assistance dog in 2016. I like to explore new things. I wish to go on holiday to further places than I have been until now. I am very passionate, but don’t have a concrete program.’
One of the things Joël continued doing is being a member of the city council for déi Lénk, a left wing party. ‘I have a general agenda in the council and don’t only talk about matters that are important for people with a disability. Whether I will pose me as a candidate to be re-elected in 2017 I don’t know yet.’
In case you wish to learn more about the organizations for which Joël is active, here are the links:
Nëmme Mat Eis
déi Lénk  
Copyright text: Johan Peters, September 26th - ...
This is the favorite song of Joël, related to his lost love Andrea.