Caring for the caregivers

Amira Hisham, Tuesday 6 Feb 2024

Special assistance should be extended to women looking after people with special needs, says Amira Hisham

Living

 

A fatigued-looking woman in a female-only carriage of the Cairo Metro engages in an argument with fellow commuters about letting her son share the ride with her.

In a subdued tone, she endeavours to shield her son from the customary discussions surrounding his mental disability, saying that she cannot permit him to travel independently in the men’s carriage because of it. He needs to seek refuge from the chaos of the crowds.

This seemingly straightforward scenario belies the recurrent tribulations of a 50-year-old woman, Um Abdu, and her mentally challenged son of 25 years. Devotedly tending to him, she grapples with the inescapable reality of her son’s perpetual dependence, and thus is compelled to accompany him on errands.

Despite her suffering, Um Abdu is a lucky woman – considering. She is sustained by a family breadwinner and a stable source of income. Her plight is therefore mostly confined to the need to take her son along on errands and the occasional argument encountered on public transportation.

In a markedly distinct situation is Nagwa, a woman nearing the age of 30, who diligently shoulders the responsibility of carrying her daughter, less than five years old, around with her each day. Before heading out to work, she takes her to a nursery. However, this routine has taken its toll on Nagwa’s well-being, as she now battles vertebral inflammation, causing persistent pain in her shoulder.

The absence of paved roads where she lives and the impracticality of using a stroller, coupled with the challenges of navigating public transportation or ascending Metro stairs without escalators, leave Nagwa with no viable alternatives but to carry her daughter.

Expressing her gratitude at “finding a nursery that can accommodate my daughter’s cerebral palsy,” Nagwa reveals the financial strain of the specialised care required. “Despite securing a spot in the nursery, the costs are a lot more than her peers,” Nagwa told Al-Ahram Weekly.

Nagwa, employed as a receptionist at a gym in Cairo, dedicates eight hours a day to her work, earning a salary of LE5,000. While this would have sufficed under normal circumstances, the recent surge in prices has exacerbated her financial challenges. Lacking a personal vehicle or private transportation, she relies on public transit to go to work and run her errands.

Mona, a housewife, proudly shares her daughter’s remarkable achievement at entering university despite being visually impaired. But Mona’s pride is accompanied by the daily commitment of accompanying her daughter to and from university.

While there are visually impaired people who navigate independently, Mona shared with the Weekly her constant apprehension for her daughter’s safety. Despite using a white cane when she is out of the house, her daughter encounters many obstacles, including crossing roads and navigating unpaved pathways, that could pose a tangible threat to her life.

Moreover, Mona harbours concerns about her daughter’s well-being, fearing harassment as she walks alone or faces unwanted attention from men.

Egypt is home to 11 million people with special needs, and the government makes various efforts to assist and support them on multiple fronts. The state has also implemented numerous strategies to prevent disabilities and diminish their prevalence in society, with a primary focus on medical examinations for early detection and intervention.

Despite these efforts, challenges persist, intensifying the hardships faced by people with special needs and their families, particularly mothers and caregiving assistants. Predominant among these challenges are mobility on roads and a lack of autonomy on public transportation.

The National Council for Women (NCW) initiated a research study titled “Towards Friendly Governorates for Women and Girls with Disabilities and the Mothers of People with Disabilities.” The slogan was “With access, we can achieve our dreams.”

In the light of the research findings, Maha Al-Hilali, deputy rapporteur of the NCW’s Women with Disabilities Committee and an adviser to the minister of social solidarity for disability and rehabilitation affairs, said several governorates in Egypt are seeking to establish a more friendly environment for people with special needs and their families, including Cairo, Giza, Alexandria, Ismailia, Fayoum, Luxor, Aswan, the Red Sea, and Daqahliya.

These efforts include providing support through therapeutic and rehabilitation centres, as well as educational institutions dedicated to providing comprehensive care and assistance to people with special needs in order to enhance their quality of life and empower them, she said.

The governorates providing such support are not limited to those she mentioned, as the services and facilities offered differ from one governorate to the next based on local circumstances and the available resources in each area.

Elaborating on the challenges facing women caregivers in Egypt, including mothers, wives, and sisters, Al-Hilali said these women may lack social and family support and suffer from insufficient assistance, both practically and emotionally. The absence of appropriate services and facilities tailored to the specific needs of people with disabilities and their families poses a significant hurdle, she added.

Difficulties in locating suitable rehabilitation or educational centres, as well as specialised health services, compounds the challenges that may be faced by these women.

Mothers of children with special needs may confront educational challenges and struggle to secure suitable educational opportunities aligned with their child’s disability. The search for appropriate schools and the acquisition of proper educational support for their children may prove to be demanding tasks, Al-Hilali noted.

Moreover, the often long periods needed to ascertain the type of disability and access appropriate support can significantly impede meeting the needs of people with disabilities.

Mothers and women caregivers can often encounter discrimination and a lack of understanding from both society and institutions, Al-Hilali said. Accessing public services and employment opportunities can become challenging, and they may face discrimination in asserting their rights and the rights of family members with disabilities.

The responsibility of caring for a person with a disability can place significant physical and emotional stress on mothers and women, she added. The challenges they encounter may also adversely impact their health and emotional well-being.

Additionally, they often lack access to appropriate and specialised professional support in dealing with the multifaceted challenges of caregiving and rehabilitation for family members with disabilities. The absence of professional guidance compounds the difficulties they face.

Al-Hilali said disabilities can lead to additional financial burdens related to treatment, care, and rehabilitation. Mothers and women may find it challenging to shoulder these extra costs.

To foster equality and empowerment, more collaborative efforts from society, government, and institutions are needed, Al-Hilali stressed. She highlighted the diverse needs of mothers, women with children with disabilities, and those caring for people with special needs, which vary based on the nature of the disability and the specific requirements of the individual concerned.

But while needs may differ, there are general requirements crucial for rehabilitation and support when a disability is identified.

According to Al-Hilali, these encompass providing women caregivers with comprehensive information about the disability and its implications for their life. Access to details regarding available treatments, educational services, social support, and the rights of individuals with disabilities is essential for women caregivers.

Given the challenges associated with disabilities, mothers and women caregivers often experience emotional stress and trauma. Adequate emotional and psychological support becomes imperative at this stage, necessitating access to counsellors or participation in psychological support groups.

Al-Hilali said children with disabilities demand tailored educational programmes to address their unique needs. It is crucial to provide qualified teachers and ensure that schools are equipped with the necessary resources to offer appropriate education and educational support. This ensures that children with disabilities receive the specific assistance required for their educational development and growth.

Individuals with disabilities often require specialised medical services and physical therapy to enhance their mobility and physical development. It is essential to ensure access to doctors, experts, and the necessary services for medical rehabilitation and physical therapy to support their overall well-being and functional improvement, Al-Hilali added.

In certain cases, people with disabilities may benefit from technical assistance or specialised equipment to enhance their capabilities, foster independence, and improve overall quality of life. Mothers and women caregivers should be guided in discovering and utilising these technologies and technical aids to empower people with disabilities.

Al-Hilali stressed that providing appropriate guidance and training is crucial for people with disabilities and their families to help them achieve their goals and develop essential life skills. Support from rehabilitation experts and vocational trainers can facilitate the provision of tailored programmes, aiding in the holistic development and empowerment of people with special needs.

 


* A version of this article appears in print in the 8 February, 2024 edition of Al-Ahram Weekly

Search Keywords:
Short link: