Posted 29 марта 2021, 14:07

Published 29 марта 2021, 14:07

Modified 24 декабря 2022, 22:36

Updated 24 декабря 2022, 22:36

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Lida Moniava: "Charity givers should not substitute for the state"

29 марта 2021, 14:07
People do not need pity for their illness, but the ordinary human rights to live a human life, despite the illness.

A very important publication was written on her blog by a public figure, the founder of the children's hospice "House with a lighthouse" Lida Moniava:

“When I write that charity is humiliating, benefactors are offended. Well, in vain!

All children's hospices in England are 80-90% funded by charitable donations. Just like the House with a Lighthouse in Russia. About 15% of our hospice receives subsidies and grants from the state and 85% of the budget we collect through charitable donations.

The difference is what problems we solve. What do hospices in England collect money for? For social respite, for family support after death, for help during the dying of a child, for the support of the brothers and sisters of a sick child. What does the House with a Lighthouse collect money for? For medicines, wheelchairs, medical equipment, nutritional care, consumables. In England, patients receive all this free of charge from the state. There you do not have to act in a video for a TV channel, cry at the camera, turning your family history inside out in order to provide the child with food for a gastrostomy tube. In Russia it is necessary. And this is humiliating.

Charity must exist, it is a very important, necessary and noble cause. The question is what problems the state solves, and what charitable organizations. The basic needs of a person, which are described in the Constitution, must nevertheless be solved with state, and not charitable money. For example, medical care, drugs, medical equipment, accessible environment. Imagine that in order to remove appendicitis, give birth to a child or receive treatment for covid, you would have to collect charitable donations every time. Now all this can be done for free, this is the norm.

But why can't you get medical food for free? A good wheelchair? Lifts, medical bed? Why is it necessary to collect charitable donations for basic things? It is possible to build an elevator in the house, and people with disabilities will be able to freely leave the house. And you can not build an elevator and for the sake of every exit to the street tell the whole world a plaintive story, where and why you are going, ask for help, wait, thank.

While I was working in an NGO, I thought that if you wait for help from the state, everyone will grow old and die, it will be faster and more efficient to solve everything for charitable money here and now. When I got Kolya, and I became the guardian of a disabled child, I realized - why the hell is all this happening? Why do I need to beg people to donate 60 thousand rubles a month to Kolya for food for gastrostomy instead of the state purchasing medical therapeutic food? Why the hell do you have to ask for help to get out of the house, why don't the city authorities make the environment accessible in the city?

Now I think that all human rights and needs, which are described in the Constitution, should be provided by the state at the expense of state funds. And the task of NGOs is to achieve this. Not to ask the child for money for the medicine, but to tell the Government - why the hell did you not buy the medicine for the child? And only for additional things that do not belong to state guarantees, but are important for a person in a difficult situation, these are rather individual things related to an individual approach - to ask for charitable help for them.

The attitude to charity changes dramatically when you become a supplicant from the position of a benefactor. I myself love and consider it important to help others. And I don't like asking for help and depending on others. When Kolya came to me, I moved from the position of a benefactor to a beneficiary. Without the help of people, I cannot even cross the road on Tverskaya or Arbat with Kolya (there are no accessible crossings), and there are a lot of other things when, with all my resources, I cannot cope on my own and must ask for help.

Am I grateful for the help? On the one hand, yes, of course. On the other hand, I would like 100 times more not to need help and to cope with everything myself. The rights and services guaranteed by the state are 100 times more important to me. Only rights give a person the opportunity to live independently, independently. The less a person depends on outside help, the freer and happier he feels.

What is more important - for a charitable foundation to tell mournful stories about how terminally ill children need medical nutrition, collecting money for this? Or so that we achieve a change in the legislation, and medical nutrition would be given to everyone automatically through the polyclinic?

I now have experience from both sides. It's nice to be a benefactor. It is extremely difficult to be a seeker for help. If we work not only on targeted assistance to sick children, but also on changing the state system, state support, state guarantees, there will be more sense as a result.

People do not need pity for their illness, but the ordinary human rights to live a human life, despite the illness. Rights are more important than charity. Although charity is also very necessary and important..."