The Struggle of a Disabled Traveler Looking to Make a Living

Richard Kuppusamy is a man who has to constantly travel for his work. Every 3 weeks, Kuppusamy boards a plane bound for whatever destination in order to earn a living. The only problem is: Richard suffers from a rare condition called spina bifida, a malformation of the spine that renders the patient paralyzed from the waist down. As such, the patient is wheelchair-bound for his or her entire life and relies on these devices in order to move around and perform most basic activities.

Unfortunately for Richard, since he needs to travel so much, he has to constantly interact with an industry that is rarely accommodating for people with disabilities: the travel industry. When landing in his hometown, Richard saw that the spokes and axles of his trusty wheelchair were bent to the point of rendering the device inoperable. Issues like these are common when traveling, a fact that is especially disturbing, considering people like Richard depend exclusively on these pieces of equipment.

Spina bifida is a birth defect characterized by the improper closing of the backbone around the spinal cord, resulting in a variety of symptoms depending on the type of the disease. The main cause of this disease in 95% of the cases has been discovered to be a folic acid deficiency in the mother at least 3 months before conceiving, and in the 3 months after becoming pregnant. The cause of the other 5% of cases still remains unknown. There are 3 types of spina bifida: spina bifida occulta, meningocele, and myelomeningocele.

The first type, spina bifida occulta, never feature a prominent protuberance on the patient’s lower back. Instead, it can be identified by a dark spot, a hairy patch, or a dimple in the gap of the spine. Luckily, this variation is usually asymptomatic, or if there are symptoms, they are usually very mild. Meningocele is the “medium” variation; its symptoms are seldom serious, though there may be a noticeable protuberance in the patient’s back as a result of the disease. Myelomeningocele, also known as open spina bifida, is the most severe form and can be identified by a large cyst in the patient’s back, filled with spinal fluid, parts of the meninges and, in the most serious cases, the lower end of the patient’s spinal cord.

The symptoms of this disease will vary according to the position of the cyst on the person’s spine; the higher it’s located, the worse the symptoms will be. Some of the most severe symptoms of spina bifida can be total or partial leg paralysis, alongside the total or partial loss of sensation in the aforementioned extremities, and the loss of bladder and bowel control. Furthermore, if left untreated, spina bifida can also cause other conditions, such as hydrocephalus, as well as other intellectual and motor disorders.

Despite popular belief, spina bifida doesn’t have a genetic component; parents who suffer from the disease will not pass it down to their offspring. Nevertheless, the condition that can be inherited is the parents’ difficulties to process folic acid, resulting in an increased probability for their grandchildren to be born with spina bifida, instead.

Individuals like Richard who suffer from spina bifida or other conditions that affect motor function, like muscular dystrophy, have to struggle, besides their condition, with a world that doesn’t entirely understand the extent in which their function is compromised. This concept becomes entirely apparent every time an airline or other organization manages to damage their wheelchair, in an act that is akin to binding the legs of a healthy person; when their only means of transportation becomes damaged beyond repair, it is the same as stripping a person from its only means of transportation.

The lack of information

However, when it comes to treating special needs individuals, Richard says that the most common issue is the lack of relevant information. The term “accessibility” often encompasses a very wide array of features that may or may not pander to individuals with special needs. For some business owners, their establishment might be accessible only for the fact that it is wheelchair accessible. For others, however, the accessibility of their businesses may extend to include handrails in the bathrooms, elevators large enough to accommodate wheelchairs and large dining areas where said individuals can comfortably sit down and enjoy a meal.

Regardless of the accessibility of the establishment, Richard states that the lack of information also extends to staffing and personnel, as the workers are seldom aware of the features that their establishment has for disabled individuals. On more than one occasion, Richard has tried reaching out to the prospective hotels he would be spending nights in on a number of trips, only to find that the staff isn't even aware of which features their establishment has in place for special needs individuals. Furthermore, these very same features are hard to find online or are completely missing from the hotels’ websites, further complicating matters for those who require them.

To further clarify the extent that this issue has worldwide, the travel technology provider Amadeus performed an international study where they examined the needs of over 700 disabled travelers. Among the results, it was discovered that over 53% of the population required aid in the booking process, considering that they felt unable to properly investigate whether the hotel offers proper accommodations for their special needs or not. Furthermore, while some booking websites offer special filtering options so that clients can browse for hotels that offer accessibility features, this still doesn’t help, considering that each establishment has different standards on what “accessibility” actually entails.

Similarly, some airlines also present the same issues, as they remain steadfast in their refusal to allow some equipment to travel with their passengers. There have been reports of individuals suffering from muscular dystrophy who had to leave the batteries of their motorized wheelchairs behind because the airline wouldn’t allow them to fly otherwise. The rigidity in their position only goes to show the extent of the ignorance of many organizations about the needs of disabled individuals.

There has been an increase in awareness about the plights of disabled travelers in recent years. However, as the evidence has proven, there is still much in which we could improve when it comes to making life easier for our brothers and sisters who have special needs. We need to reach a standard of features that must be set in place in order to provide proper access to those with special requirements. Nevertheless, until that time comes, we must spread the word to further increase awareness on this issues and to make life easier for those with special needs in our own regard.