Daily Times

Children and adults with disabilities and special needs are one of the most marginalised segments of Pakistan’s society. They are perfect in their own world but unseen, unrecognized and forgotten in the real world.

Public attitudes towards the special kids are often informed by stigma and widely held myths. For many families, the difficulties involved in dealing with other people’s reactions means that they are unwilling to expose their children to the public gaze. Subsequently, when people with special needs enter adulthood, it’s only a survival journey.

Cerebral palsy, commonly known as CP, is a group of disorders that is caused by abnormal brain development or damage to the developing brain that limits a person’s ability to move and victims exhibit a wide range of signs and symptoms including lack of muscle coordination, stiff or tight muscles, weakness in limbs, differences in the tone of the muscles as either being too stiff or too floppy, excessive drooling and trouble with the most basic body functions like talking, eating, swallowing, breathing etc. Other conditions common with CP children include intellectual disabilities, delayed growth and development and spinal deformities causing trouble in sitting, standing, walking and chronic back pain. In the case of severe CP, it causes seizures and may lead to blindness, loss of hearing and speechlessness.

The problem is beyond normal understanding, as those with CP are severely under-represented when services and initiatives are being allocated. CP-impacted individuals suffer from a severe shortage of vital medical resources, including access to various kinds of therapy, medication and affordable inclusive educational facilities. CP-impacted individuals are being treated by a number of medical professionals, from neurologists, paediatricians to those offering miracle cures in the form of stem cell therapy. CP-affected families are often misled and their naïveté as well as desperation for a reliable cure leads to expensive, wasteful medical procedures and unnecessary medication.

While, CP is a permanent life-long condition, it is portrayed or generally considered as a disease to the unsuspecting family members. Even institutions specialising in special education call CP-affected children and adults by the incorrect terms like “physical”. Those with CP are not necessarily also mentally-impaired and can benefit from informal education.

Since the governments have limited resources to address the issues of those who are forgotten, it is important to understand what CP is and how to cope up with the challenges associated. To start with basic understanding due to advances in treatment and management, life expectancy for individuals with CP is nearly the same as the general population. However, people with CP often face issues and challenges that people without the disorder don’t face. People with CP are likely to experience premature aging. They also use three to five times the energy of people without the disorder to complete everyday tasks. Over time, that strain and demand on muscles and bones can begin to wear down the body. Eventually, the overuse of joints like those in the knees, ankles, hips, and arms can lead to osteoarthritis, also called degenerative arthritis.

For some individuals, premature aging may require the use of mobility aids, such as wheelchairs or crutches. For others, the ability to walk may be lost entirely. Other signs of premature aging include increased pain, stiff muscles, and problems with the heart or lungs.

People living with CP also feel isolated because of the condition. Due to difficulty in mobility people with CP face social isolation, anxiety, and even depression. Depression is more common Trusted Source in individuals with chronic diseases like CP. In fact, one 2017 study of 501 adults with CP found that 20 percent of them had depression. It’s important to address emotional and mental needs of people with CP. Support groups, therapists, and other mental health experts can be a good resource for individuals with CP.

Understanding and being aware of the problem is the first step towards the cure, and since there are no proper infrastructures and institutions to support People with CP, self-awareness will play an effective role. It is important, people with CP and their families who have greater understanding of this disorder and associated risks engage in a discourse to highlight and address the issue.