A few days ago I made a mistake and replied to the comment under the FB post about deinstitutionalization. The commenter asked us for a definition of an institution: “You are all just freaked out by that word. Schools for deaf/blind children are institutions, too because they are residential. Saying that all institutions are bad is dangerous. It causes a mother with a child in a vegetative state to feel guilty about putting them in a paediatric nursing home.”
Well I do admit that I am freaked out by the idea of institutionalisation and here is why you should be, too.
Home sweet (nursing) home
Let’s take a moment to think about the example the commenter presented. Would it really be the best for the child with those needs to be placed in a nursing home? Would it be best for their family? Is there really no other way? Well actually there is. This child should be provided with the professional care and support they need at home through 24/7 personal assistance.
Having professional paid carers won’t be enough because the child would surely need special equipment, you say? I agree and it should once again be provided for them at home. “But how could you have, let’s say, a special bed or other equipment at home?” The same way you could have it in a nursing home, I guess? Institutions are just buildings, they are not built with magic nor are they located on the moon.
“But what if the home is inaccessible or just too small?” If the family lives in poverty is it better to put the kids in a group home or to give the family a suitable social housing, so they could stay together? The same answer is correct in the case of a family with a disabled child. If their living situation is unsuitable for their kid it is our duty as a society to help them.
Putting someone in an institution isn’t helping. It is traumatizing and damaging for the whole family.
When a parent needs someone to look after their child while they are at work we don’t ask them to give up the kid. We simply provide them with affordable nurseries. Every kid needs to see a paediatrician regularly but we don’t send them to live in institutions staffed with paediatricians instead we make sure that there are paediatric offices open in every area. Kids have a right to free education and so we make sure there are primary schools in our towns, cities and even villages. Why then does a deaf/blind child have to live away from home to learn their numbers? How is that fair?
Able-bodied children have many needs that their parents wouldn’t be able to meet alone but no one asks them to give the kids up because of it. Why do we ask that of parents with a disabled kid, then?
When we are speaking out against institutions we aren’t trying to shame traumatized parents who had to put their children in one. We are trying to make it so they wouldn’t have to go through that trauma at all.
Locked up for being disabled
“You might be right about children, but what about disabled adults with no parents? Surely in their case living in a nice care home isn’t so bad.” Except it is.
Care homes (not unlike prisons) are very regimented. Meaning the residents are told by the staff when they have to go to bed or wake up, when and what they could eat and how they could spend their free time. They have to live with people they didn’t choose and might not get along with at all.
Sure they have a roof over their heads and they are not hungry but they have no freedom. They can’t decide on a whim to go for a walk or to the café or to the library to pick up a book they just heard about on the internet, they can’t have a pet.
Living in an institution limits their ability to pursue a career or their passions, build new friendships or enter a romantic relationship.
It alienates them from society, perpetuating an ableist prejudice that disability is shameful and should be hidden away.
It is also a violation of our right to live independently and be included in the community which is a part of the Convention on the Rights of Persons with Disabilities.
“But they are taken care of, their needs are met in a way that wouldn’t be possible in the community.” And you are wrong again. Not only are they treated with little regard for their personal desires, their basic needs often aren’t met properly either.
Every disabled person is different. And I don’t mean just the fact that our personalities are unique. Even the exact same diagnosis could affect us in various ways and that means that our needs also differ greatly. So if you were trained in manual handling in a care home the things you know could be totally incorrect in regards to the specific needs of an individual. And I am not talking about causing someone a mild discomfort, I am talking about potentially breaking someone’s leg because you didn’t know how to lift them in the right way. If you provide care and assistance for a disabled person in their home as a personal assistant this doesn’t happen because your training is tailored specifically for their needs.
I live in England. In the process of deinstitutionalization the United Kingdom is leaps and bounds ahead of my homeland, Slovakia. Where in 2020 the government tried to reduce funding for personal assistance in such a way that no one would be able to afford a personal assistant anymore. Luckily the reform was stopped after massive protests from the disability community. So the UK is better but that doesn’t mean everything is perfect here. A lot of disabled people who need constant assistance now live in supported housing in the community but there are still miles to go towards real inclusion and independence.
In some cases those people are still isolated and unable to fully realise their potential because of discrimination on the job market or inaccessibility in their communities. Others, especially if they have learning disabilities, still live in an environment where their voices and desires are being ignored. Unless you treat people with disabilities as individuals worthy of respect instead of children you could order around nothing changed. They are in an institution even if that institution is now located in a two-bedroom flat.
Money money money it’s not funny in an ableist world
One of the arguments against deinstitutionalization is that it is too expensive.
Upholding the rights of disabled people isn’t and shouldn’t be a cost-cutting exercise, but it looks like keeping institutions running actually costs more. And furthermore disabled people that are living independently are often able to economically contribute to society which wouldn’t be possible from inside an institution.
Become a personal assistant, they are cool
What steps can you take on the path to equality for disabled people? Ask companies, venues and organisations for accessibility even if you don’t personally need it (and remember it goes beyond wheelchair access, there is also sign language interpretation, audio description and much more…). Treat every disabled person you meet with respect and listen to us when we are saying that something is harmful. And last but not least if you want to work as a carer consider becoming a personal assistant instead of getting a job in an institution.