People with Intellectual Disabilities in Iran Lack Crucial Services and Support
Government Does Not Differentiate Between Intellectual and Psychological Disabilities
At least 1.5 million people were living with intellectual disabilities in Iran in 2018 but only 350,000 of them were registered with the State Welfare Organization (SWO) that year, according to figures presented by state officials.
The Iranian government meanwhile failed to provide specific programs to help citizens living with intellectual and psychological disabilities gain independence in their lives or protect them from abuse and violence.
Services provided by the SWO, the country’s main agency tasked with providing services to people with disabilities, instead include offering severely inadequate financial assistance to a limited number of families while focusing on “disability prevention,” which is not in its mandate.
The mother of a 16-year-old girl with Down Syndrome told the Center for Human Rights in Iran (CHRI) that the SWO provides inadequate financial and social support, leaving families to fend for themselves:
“They have never asked me about my daughter’s condition or how she’s being treated at home. They never speak to her either. The main thing the SWO does is pay disability allowance only to a limited number of people. On several occasions, people from the SWO have made surprise visits to our house and I think their intention was to check our financial situation. They probably decided not to help us because they could see we don’t have a bad life. Recently, 16 years after we registered our daughter with them, they deposited 500,000 tomans ($118.7 USD) into her account.”
She added that vulnerable children with intellectual disabilities are verbally abused at school:
“Unfortunately, these kids are routinely disparaged at the special school. But most of the kids are not the complaining type. They don’t know their rights. Sometimes they don’t even say anything to their family. They take the insults and accept the hardships at school and stay quiet. But other kids understand their rights and they know they can complain about their teacher.”
The people who spoke to CHRI for this report did so on the condition of anonymity for fear of reprisals by security forces and Iran’s judiciary for speaking to a foreign organization.
Incorrect Terminology and Lack of Support
Responding to a question from the state-funded Islamic Republic News Agency (IRNA) about state services, Hossein Nahvinejad, the SWO’s deputy in charge of rehabilitation, said resources were being put towards disability prevention.
Meanwhile, the needs of the majority of an estimated 12 million people currently living with disabilities in Iran continue to go unmet.
“At the present time, the types of services provided to these people include preventive measures against inherited disorders that could cause mental backwardness,” said Nahvinejad. “We provide education on genetic matters, and pre-marital consulting especially to families who have a history of mental disorders, something that has become compulsory in the [governmental budget] Sixth Development Plan.”
Disability prevention is the responsibility of the Health Ministry and other related organizations, not the underfunded and poorly staffed SWO.
In testimonies provided to CHRI, disability rights activists said the lack of qualified services and support provided by the SWO as well as incorrect terminology used by officials have caused confusion regarding the difference between “disability rights” and “disability prevention.”
The director of an organization advocating the rights of people with intellectual disabilities in Iran said:
“I have been working for children with intellectual disabilities for more than 10 years and we still haven’t managed to teach the authorities not to use words like ‘mentally retarded’ or ‘Mongols.’ In the eyes of society, and even among the welfare officials, people with psychological disabilities don’t understand anything and they should just be taken care of until their life comes to an end. But just like all other human beings, they have the right to a happy life, free from violence. There is a lot they can do, including having a family.”
The activist added: “On the International Day of Persons with Disabilities, many things were said and written about the rights of the disabled. But very little attention is given to people with intellectual disabilities and their needs. Even [Iran’s] Law for the Protection of the Rights of Persons With Disabilities, which everyone is trying to implement, does not include any particular provisions for them.”
“No Bright Future” For Children With Intellectual Disabilities
The SWO is in charge of caring for 40,000 people with intellectual disabilities who have been registered in special institutions in Iran. Yet some families are trying to leave the country due to the low quality of support and services provided by the organization.
The mother of a girl with Down syndrome told CHRI: “My husband and I are doing everything we can to leave the country because there’s no bright future for children with Down Syndrome in Iran. Since the day my daughter was born, we have been worried about what would happen to her in this world if we died? There are no state agencies or private organizations that can provide proper and scientific care for children with Down Syndrome here.”
She added: “My husband and I are both employed. We can cover the expenses of our daughter on our own and put her in different classes and fight for her proper development. But what about families who are not financially well off? There’s no organization that can help them. Many families keep these kids at home and they don’t see the light of day for long periods of time although they are just like all other kids in many ways.”
According to Nahvinejad, only 22,000 Iranians with intellectual disabilities received daily training in state centers in In these centers, those under the age of 14 are taught daily life skills while older ones are provided technical and professional training.
But the mother of the girl with an intellectual disability told CHRI that the public centers, especially those located outside the Iranian capital, are overcrowded and poorly staffed: “The public classes are not very good and they are always too crowded and you have to wait in line and when it’s finally your turn, the speech therapist or occupational therapist is already tired and has no patience or energy left.”
“Imagine the families who don’t have a lot of money and have to take their kids to these government-run classes and how tired they get and in the end the results they get are nowhere the same as private classes,” he added.
Lack of Prevention of Violence and Abuse
According to the World Health Organization (WHO), people with intellectual disabilities are subjected to violence and abuse more frequently than others with disabilities, “Children with mental or intellectual impairments appear to be among the most vulnerable, with 4.6 times the risk of sexual violence than their non-disabled peers. That’s why it’s particularly important for governments to implement special measures to prevent harm to this vulnerable community.”
The director of the organization advocating the rights of people with intellectual disabilities told CHRI that state social workers rarely check up on vulnerable people with intellectual disabilities or listen when one of them speaks up:
“SWO social workers almost never inquire about how people with intellectual disabilities are treated by their family. Even despite tight measures to prevent sensitive information from getting out of institutions, we sometimes see reports published about people with disabilities being abused in these facilities. The problem is that no one listens to these abused people to understand what they have gone through. The impression is that a person with an intellectual disability is unable to say anything straight or is not worth listening to, but according to my experience, that’s completely wrong.”
When social workers do try to help, the authorities spend more time trying to cover up the case than just trying to prevent further abuse.
For example, in September 2017, a social worker who asked not to be identified told the state-funded Mehr News Agency that she had repeatedly reported the sexual abuse of a girl with intellectual disabilities by a staff member at a center in the city where she worked but nothing was done to stop the abuse despite the presentation of evidence.
Instead, the girl was transferred to another center. The Mehr report did not provide any information about the center or a follow-up report about whether anyone had been held accountable or whether any measures had been taken to prevent the abuse of other girls or boys.
Lacking Statistics and Public Awareness
There are no official up-to-date statistics on how many of Iran’s 80 million people have disabilities.
Based on 2015 data from the three government agencies providing services to people with disabilities, more than 1.87 million (4.2 percent of the population) were registered as having disabilities. But the actual number of people with disabilities in Iran is likely much higher.
Some public officials have acknowledged that the number of persons with disabilities in Iran is likely between 11 and 14 percent.
For that reason, there are no reliable statistics about those living with intellectual disabilities either, but a, a SWO rehabilitation specialist, there were at least 1.5 million people living with various forms of intellectual disabilities in Iran in 2018, making them the largest group of people with disabilities in the country.
According to Nahvinejad, the SWO’s deputy in charge of rehabilitation, only 350,000 people in this group were registered with SWO that year.
Meanwhile, most people in Iran do not know the difference between intellectual and psychological disabilities. The Iranian government has also failed to differentiate between the two groups.
Intellectual disabilities, like Down Syndrome, limit a person’s ability to reason, learn and solve problems, often resulting in restrictions in their personal and social behavior. Psychological disabilities, such as schizophrenia, fall under the wider category of developmental disabilities.
Failing to differentiate between these two categories not only results in the spread of misinformation in society, including harmful stereotypes and stigmatization, it also leads to state agencies providing inadequate support and services that are necessary for people affected by these disabilities to live fulfilling lives.