No room for the disabled with high dependency

At night, I dream that one of the King and Queen’s children is disabled. Highly dependent. Mathilde and Philippe, each in turn, help their child to eat, drink, get dressed and wipe his bottom. 

They calm his anxiety attacks. This child is cerebral palsy or autistic, multi-handicapped or has a degenerative or genetic neurological disease. When he reaches the age of 21, his parents put him on the waiting list for adult care. In Brussels, in Wallonia, in Flanders, everywhere. No room. So, as they are not King and Queen for nothing, they summon the government and strike a few good little blows of the magic wand on their fingers. As they are not only rich and powerful but also very good, they propose the creation of dozens of care structures for all children who, like theirs, are in a situation of great dependence! For they are many in the kingdom. Besides, to fall asleep, I count them and I arrive at… 73 800. In Brussels alone, there are 7,000 of them, of which only 10% have a satisfactory solution. 

One morning, social workers and parents woke up, shouted « Basta » once, drank a cup of coffee more than usual and created the GAMP: the Action Group that denounces the lack of places for disabled people with high dependency. Thanks to the sit-ins in front of ministries and parliaments, to the questioning, to the distribution of peanuts to the deputies (exchange of good practices), to the sensitization campaigns, to the lobbying of the authorities and the media, the political world is summoned to open its eyes on a situation which has been going on for years. 

« NON-ASSISTANCE TO A PERSON IN DANGER ». 

GAMP as well as twenty other associations decide to strike a blow and, through the League of Human Rights, files a complaint against the Belgian state. On July 29, 2013, the European Committee of Social Rights condemns — unanimously! — Belgium for non-assistance to a person in danger. « In addition to the financial losses that this state of affairs entails for the families, they are exposed to even greater efforts when they mobilize with their own means in order to set up, without public subsidies, appropriate reception and accommodation centers. As a result, the lack of reception solutions and social services adapted to the needs of severely disabled people puts many families in a state of precariousness that weakens their cohesion, which amounts to a lack of protection by the State of the family as a cell of society.« says the Committee in its report. 

It is interesting to note that the Belgian government has spent more energy refuting the accusations made against it on 112 pages than on finding solutions. Europe’s response was swift:  » No justification put forward by the Government of Belgium for its failure to provide a (sufficient) number of places in reception and accommodation centers for disabled adults with a high level of dependency can be accepted. The Committee therefore finds that this failure constitutes a violation of the Charter ». And VLAN! 

SO MUCH INDIFFERENCE! 

Beyond the fact that the disabled and their relatives do not represent a sufficiently important electoral issue, the evil is undoubtedly deeper: the disabled person with a high level of dependence represents the antithesis of what politics promotes, namely growth, performance, progress, the accumulation of goods and rewards. However, slowness, lack of interest in material goods, and obvious indifference to brands and advertising are not values that our political leaders wish to promote. They are even the opposite of what society expects from its members. If the disabled person is able to communicate, he or she goes straight to the point and, apart from purely practical questions, asks questions about his or her condition as a human being. It forces those close to them to see the world differently. To admit that, despite what it tries to make us believe, the society of the all-controlled is a lure. Ah, this world where independence is magnified! Or any request for help or admission of helplessness is perceived negatively! A high dependency disability teaches us humility, encourages us not to consider it shameful to be vulnerable. A sign on the glass door of my daughter’s home, which is located 150 km from my home in Brussels but which I consider myself lucky to have found because she is happy there, warns: « You are entering a place where speed is not allowed ». And this word, speed, you will have understood, contains many others… 

Finally, and perhaps most importantly, the disabled person reminds us how fragile and ephemeral our condition as able-bodied people is. In her wheelchair or because of her clumsy gait, through her « out of place » or non-standard behaviors, by speaking with difficulty or not at all, by using another system of communication than speech, she reveals to everyone that her handicap, innate or acquired, can happen to anyone. The disabled are the living caricature of what we do not want to be: imperfect. They hold up to the valid a mirror in which, in part, he recognizes himself. And the politician, more than any other human being on earth, always wants to appear (and not be) the best everywhere. However, parents want to believe that they are not all like that… 

THE NEED TO BUILD 

And in the meantime, they initiate projects. These are either pending for years (this is the case for four projects led by ASBLs in the Brussels-Capital Region) or are developed by parents who call on private funds. Those who do must continually fight to keep the « business » afloat (Dr. Englebert’s Lasne, for example). Following the example of what has been created in certain Scandinavian countries, in England or in Holland, Anne-Françoise and Bernard Riat, Olivier’s parents, founded the Pilotis: existing houses that can be adapted to accommodate five residents, their companions and, on the top floor, able-bodied tenants who agree to participate in the life of the little community. The idea, innovative, citizen, likely to be extended to the whole city and thus to solve definitively the problem of lack of space, should interest the public authorities. Especially since it is an economic solution: many buildings are abandoned. From the beginning, GAMP has advocated for a transversal policy that would bring together the Ministry of Housing, the Ministry of the Disabled, the Ministry of Employment (to subsidize the accompanying staff) and the municipalities around the table. But until now, everyone has been passing the buck, refusing to get involved, saying that the issue of disability is not their responsibility and blah blah blah. 

The Pilotis project also has the merit of corresponding to the famous inclusion decree that the minister responsible for the disabled (Evelyne Huytebroeck) defends. « Did the patients themselves have to finance the hospitals? Did the parents themselves build the schools and nurseries? No. So why is it that the initiative for disability is systematically left to the parents? « GAMP is now waiting for the political authorities to make known the concrete actions they intend to take to remedy a situation that has long been denounced, denied against all evidence, and now internationally recognized. A battle has been won but not yet the war. 

Corine Jamar

Author, mother of a young girl with multiple disabilities