Goldenhar syndrome did not beat him, but he needs more support

Carolina Gomez Mena

Sent

Newspaper La Jornada
Monday, September 12, 2022, p. eleven

Atlixco, Pue., 26 years ago, when Martín Alcántara Ramírez was born, the doctors assured that he would never walk, but that diagnosis was not fulfilled. After five operations on his hip, coupled with his desire to fend for himself, he managed to get back on his feet and even climb the steep, rugged path that leads to his house.

Martín suffers from Goldenhar syndrome, a rare congenital disease, characterized by vertebral and mandibular anomalies, among others. The disease affects my spine, hip and part of my face. My back and hip hurt and I take medication to control the pain so I can walk.

His disability has prevented him from finding a job with social security and, therefore, medical attention and therapies.

“I’m trying to find a permanent job that gives me insurance, but they don’t want to give it to me because of my disability. I have put papers and papers and they tell me ‘we’ll talk to you there’, and nothing. They discriminate against me because of my disability,”

Under the light of a spotlight that hardly illuminates, in one of the two rooms that his parents’ house has, he tells the day that he has gone to one of the supermarkets downstairs, where there is power lines and paved streets, to offer his services as an usher of products and to restaurants such as lavalozas, but nothing.

At the beginning of 2019, Martín learned of the existence of the Pension Program for the Welfare of Persons with Disabilities. He did the paperwork and got the support. He now allocates that money to the purchase of medicines that reduce his pain and supports his activity of selling sweets in the streets.

I make pork rinds and I’m going to sell them, but how much can you get out of a 10-peso bag? I ask that the government continue to support more disabled people because they do not give us work so easily, and that employers have a little heart and a percentage of their jobs goes to us.

Blessing, be a beneficiary

The International Labor Organization (ILO) maintains that about 15 percent of the world’s population has some type of disability, and 80 percent is of working age. However, their right to decent employment is often denied. Compared to healthy people, those who experience them have higher rates of unemployment and are suffering from insufficient social protection, which is key to reducing extreme poverty.

Each two-month period Martín receives 2,800 pesos. He expects the amount of the pension to go up. If I didn’t have the support, I would hardly have any money coming in. I can’t save anything, I don’t get much selling. I hope it continues to increase.

Data from the Welfare Secretariat show that between 2019 – when the program began – and 2022, the amount of the pension went from 1,275 to 1,400 pesos per month. In this period, support has been given to one million 239 thousand 37 beneficiaries.

Likewise, from September of last year to June 2022, financial support was given to 994,469 people and the accumulated registry of the program increased by 11 percent, considering that registered at the end of 2019 and that existing until June 2022.

Jacinto Alcántara Robles, Martín’s father, is a municipal police officer and because his earnings are low and he has a loan to pay, We go daily, to go out every two weeks it is difficult for us. Neither I nor his mother have interference in what he receives as a pensionbut recognize that from time to time he supports ussince sometimes he buys something to cooperate with the food.

Edith Ortigoza, in charge of the program for people with disabilities in the Atlixco region, indicates that home visits are made to verify that the resource spend it on themand attend to citizen or municipal reports on any anomaly.

It adds that the young man did not have any government support, and that he had no problems joining the program, which addresses five types of disabilities: motor, visual, intellectual, hearing and psychosocial”, which are confirmed with medical certificates issued by public authorities. of health.

Where Martin lives there are no services. We don’t have drinking water, it doesn’t rise because a pump is needed. There is nothing here (no drainage either, they have a septic tank); They put this light on us, but it’s all the way down there and it reaches us with less power. If we put the blender we must have everything off. In addition, it fluctuates a lot, it has burned several things, including an iron”.

They have an old radio, but we don’t turn it on because everything goes down. Here not even to be distracted, there is nothing with which. There is no light. His wish is that Put up poles, with the light we have we cannot get ahead. We have been robbed several times because it is dark.