St. Petersburg; when the colder months hit the northern capital and the jolly ‘White Nights’ seem just like a memory of a summer day long-gone, the city shows its sad side. The rain comes, the gloom and the cold. It starts snowing and the mud builds up in the alleys, the city becomes gray with autumn days, the approaching winter days and the crowds go deeper inside themselves. Even the rush hour becomes quieter than usual, the traffic, the mud and gloom are all silent and then there is something unseen, invisible like a secret everybody knows but nobody talks of. The secret lives here, inside St. Petersburg’s walls, never leaving its hush-hush hideout simply because it cannot go anywhere. It doesn’t matter whether it is summer or winter, the secret is always there, has been.

It struggles to break through sometimes, coming out from the depth of the unseen, gasping for air and then going back under again. Few see it, and stretch out to bring it out from the shadows, weaving sunlight out of the gray days just to remember how the sun actually looks, the summer sun and the warm days.

This could be a sad story of a sad secret left unspoken but it is not. Some talk about it, some even shout to get it out in the open. It is up to St. Petersburg, Russia even to decide how the story unfolds; either it chooses to push the disabled back into their secret lives, or is willing to be pushed to integrate them into a barrier-free society.

According to St. Petersburg State public institution, "City information Computing Center", 733,875 people with disabilities now live in St. Petersburg, representing more than 15% of the total urban population. 1.6 percent of this population that is 11734 people are wheelchair-bound. 1077 are children.

Aside from providing facts and figures, Ekaterina Valentinovna talks about the difficulties regarding changes which need be done if residential areas are to become accessible, habitable even for the disabled. Each little change, even installation of a ramp on a staircase needs to be approved by each and every household living in an apartment building. Seeking the approval, asking for permission, asking people to be cooperative, ‘nicer’ towards their disabled neighbors, asking for a change in people’s attitude.

The attitude towards the disabled population has always been a major problem, a big question mark in Russia.

Invisibility! Back in 1980’s as the Soviet communist party leader, Leonid Breschnev said in a now-very-infamous quote:

"In our country, there are no disabled people."

Having held the 1980 Summer Olympic game, Moscow simply refused to organize the Paralympics which were then held in Arnhem, Netherlands.

But the disabled do exist in Russia, and what is essential cannot be seen. According the Ministry of Health, thirteen million Russians live with a disability, which is around nine percent of the population. Thirteen million, confined to boarding schools, institutions, or walls of a building they cannot escape from simply because there is nowhere to go and if there was, there is no way to get there.

They only became visible during Mikhail Gorbachev’s presidency when in 1987 disabled people were allowed to appear on television. “Glosnost”, the much-urged transparency in every facet of the society might have been the initial motive to show that ugliness, negligence and imperfections existed. “600 Seconds” and Nevzorov visited a disabled veteran dragging his amputated legs in his run-down house, asking for officials support to help rebuild the place.

Well, much has changed since the ‘there-are-no-disabled-people-in-Russia’ period. During As in 2014, the Russian organizers of the Sochi Paralympic Games saw things differently, as they went on to plan a ten-day cosmopolitan sports festival with 600 athletes from 45 nations.

Leonid who studies pediatrics simply echoes a straightforward policy in Russia:

“ . . .If the fetus has no leg (one leg) or no arms, abortion can be made before 12th or 16th week of pregnancy.” Within the same light, doctors have urged women to have an abortion once the embryo was found to have a defect. Once passed the 12 or 16 weeks mark, the abortion is not legally allowed and child enters the world of ‘Barriers’.

“A child with one arm . . . how can he be treated?” Leonid points out, “They will wait until the child is ready for a prosthesis” and yes, the government helps especially if the family is poor, but harsh economic factors always leaves its bitter mark. The quality of the state-provided prosthesis is not the best and yet some have no choice but to fare with these as they have no means to afford the ‘better’ more quality ones.

“This is Russia.” Leonid says. They will provide for the disabled so they can survive; the pension never goes beyond the survival point.

Given its bleak nature, the point of survival does not offer bright or exciting perspective paths for people born with disabilities in Russia. Lack of necessary infrastructures limits the disabled in transportation, education and work. In St. Petersburg especially the absence of necessary facilities is more pronounced. The state of ‘historical, cultural heritage’ of most buildings make installment of infrastructures impossible. Lifts could not be incorporated and ramps could not simply be added and this is everywhere. Leonid illustrates a bleak scenario or better say current hard reality:

“It is impossible to study in any faculty . . . you cannot enter the place, [go up and down those old stairs].” Becoming a student of medicine? It simply cannot happen.

“I know that the environment in our city is not the best for disabled people so it is a problem.”

Pavel lived like a healthy person, worked like one and enjoyed life and then came the stroke. His life was turned upside-down, he lost the ability to speak normally and the stroke left him with a limp for the rest of his life.

“Now sometimes when I call for a taxi, the operator thinks I’m drunk.” He says and goes on to add that people consciously or unconsciously divide the society into “normal” and the “disabled”. This might be the reason behind his unwillingness to use a wheelchair as he takes pride in overcoming his disability pain of his disability and live a ‘normal’ life. He does not want to be pushed or be looked down on.

He still works to provide for his family since the disability pension alone won’t do.

“The pension needs to be three times of what it is right now to cover the expenses of my family and I . . .”

The stroke brought about something else as well, a understanding of how the disabled fare in the Russian society. Before he never thought about them but now,

“I’ve began to understand them.”

And it is not always the matter of money or facilities but the matter of attitudes that need to be changed as well. There are for instance seats in the metro cars allocated to the disabled but these are almost always occupied by the healthy people.

“It is simply better not to impose but to propose your help”, he says.

Essentially working conditions including salaries, wages, working hours, etc. do not differ between the healthy and the disabled workforce. Resignation terms are also the same and if the disabled worker asks for change in his position, the company has to comply and provide for his comfort.

Russian rules and regulations also indicate that companies with more than a 100 people on its staff must also employ disabled personnel to incorporate them equally into the society.

“We will hire a wheelchair-bound individual in our company if we could provide all necessary work conditions and facilities.”

Ideally the only selection criteria should be the amount of skill each individual has.

He also talks about the unsuitable working hours of the rehabilitation centers which tend to work until six just when he has done working in the company and to make it worse they do not work at the weekend.

Liberty Ltd entered international tourism market in 2004 to become the first tour company in Russia, specializing in tourism for wheelchair users. Up to now, it is the only travel company in Russia providing custom-tailored and package tours for handicapped people. Liberty Ltd is an official Russian operator, member of CIA (Cruise Industry Association), and ENAT (European Network of Accessible Tourism) which could be regarded as a striking example of social entrepreneurship, focused on solving social problems.

Liberty is located in St. Petersburg and offers accessible tours both in Moscow and Petersburg for foreign travelers with special needs (for groups, individuals and cruise ship passengers), as well as accessible tours abroad for the Russian disabled.

Maria of the Liberty Wheelchair Tours in St. Petersburg speaks of hope in the hard times. As organizers of wheelchair-driver tours in Russia and abroad, they started ten years ago and they learned the hard way, little by little. They actually borrowed a wheelchair and did an initial tour of the city, “cruised” the more accessible parts just to figure out how stuff works, in a sense to figure out the extent of real accessibility of the “accessible”. The learned a lot looking up and contacting similar companies in other parts of the world like West Europe, the USA, Australia, Japan. The first cruise-line to St. Petersburg was being established and a lot of individuals came just to be shown around the town.

“Rosy…” Maria tells of their perspective as they were attempting to establish a path for the company. They’ve come a long way since then and so has Petersburg. Maria recalls a time when they had to take their own 40-kilogram ramp to visit the sites in Petersburg. At that time only the Hermitage, the Russian Museum and the lower gardens of the Peterhof had their own ramps installed and that was it. Even the wheelchair-bound tourists would want something more so Liberty took it about itself to be the ‘change’. The ramp was heavy but a change nonetheless.

“They’d just stand back and watch… for five years, we took the heavy ramp to the otherwise inaccessible Church of the Spilled Blood and they only watched us and then finally one was installed five years ago.”

Maria holds no grudges and simply wishes for more of these changes to take place all over the city and it is sometimes a matter of something as simple as ‘accessible’ toilets for the disabled which are unfortunately quite few. Maria talks about the challenges of organizing a tour of the city, something normal which includes a visit to the accessible historic sites, a break with a meal at an ‘accessible’ restaurant which believe it or not are not more than the fingers of one hand.

“Two, maybe three restaurants have the necessary parking space, barrier-free entrance, and accessible restrooms”

And at Liberty they are always checking to keep the changes in check; has there been an improvement somewhere in the city? A new ramp installed somewhere perhaps? A barrier-free restaurant or café opened? New facilities maybe? Or something has broken down… a lift, a ramp or maybe a new ‘barrier’ they should know about beforehand in order to take care of it.

And it is not always the physical changes but changes in the mentality and attitude of the society towards the disabled. The society could not be viewed as divided into fragments but a whole.

“I know that if I don´t believe in it, nothing will happen. We have to believe it, and we have to do something about it.”

The changes are coming though painstakingly slow but the existence of ‘like-minded people’ makes every development a little bit easier. Individuals who care for changes and could be either part of the administration or the civil society all struggle to make the city’s environment, the sites, the restaurants and cafes, everywhere more disabled-friendly. Liberty tour has developed a business model which might turn in zero profit but is highly valuable in the social service aspect. Instead of aiming for profit it aims for ‘civil service’:

“Zero balance, we don´t have a high profit. Profit and expenditure. This balance is the hardest part for us.”

But still Liberty keeps moving onward, bringing about changes, little progress made painstakingly slow to make the city more accessible not only to the visiting foreign tourists but also Russians living here.

Nikita Kasyanov is a computer programmer who works in software and application development. He is 24, bright and cheerful. He smiles and though he is a little bit shy, he talks passionately about his ideas and dreams. He holds a B.S in computer programming and has been working in a virtual web developing company as a client interface developer for over a year. He is also disabled.

When he was six years old, a car accident left him paralyzed and now he is confined to a wheelchair. True, he is wheelchair-bound but his soul has taken flight. He is the activist behind the E:Volution (И:VOLUTION) movement in St. Petersburg which was developed to raise awareness on the situation of the disabled and help pave the way for the integration of the disabled into the ‘normal’ society. The movement has at its heart the following message:

“We want to see the city, all of it; we want to see it accessible and we want to see it comfortable”

And its activities include defending the rights of the disabled in St. Petersburg, helping organizations become more accessible to people with disabilities, and conducting ‘integration campaigns’ to help get the disabled integrated into the society. Nikita and the two cofounders, Eugene Mezentceva and Julia Osipova became friends when all three were attending the school for people with physical disabilities;

“When we finished school, we thought we could do something for young people with disabilities.”

Unlike state organizations, this non-governmental organization (NGO) aims to provide not financial or medical support but ‘integration’ support for young disabled individuals who want to be part of the society just like a normal healthy individual going to cafes, restaurants and attending spectacles in cinemas and theatres. E:Volution is unique in this regard.

One of the initial more well-known initiatives of the movement was ‘the Walk’ where healthy ordinary people and celebrities were invited to experience Nevsky prospekt while driving a wheelchair to get the feel of accessibility or inaccessibility of the historical center of Petersburg which is full of cultural landmarks and famous theatres.

“Andrey Urgant who’s a famous actor residing in St. Petersburg also participated in the Nevsky walk.” Nikita points out, “We will be organizing a similar initiative next year and of course we hope to do more for the coming year.”

Though it was a one-time thing, it generated enough buzz to attract the attention of the local media and helped put the disabled on the St. Petersburg map, albeit for a short period of time.

“For a short period, the Internet came alive with intense discussions of what could be done for the disabled.”

But the way from an initiative to an action is quite a long one and the heated discussion was quick to point out that while there was a will for a change, there was simply no way. Most buildings in the historical heart of St. Petersburg are registered as cultural heritage and as a result, there is no way ‘accessibility’ changes could be carried out in this part. In other words, there are borders which cannot be passed unfortunately. The “small event” garnered attention both from the public and organizations who promised of changes to come.

“We didn’t see much physical tangible changes but there was certainly a raise in the awareness; suddenly the disabled came to a realization they could be a part of the society, integrated into everyday social activity, the normal life.” They could say and could be heard.

One area with more noticeable changes and improvements was public transportation. Low-floor buses were added to the commute system but what about the metro?

“Metro remains mostly inaccessible to the disabled despite the incorporation of a mechanism specifically developed for the disabled.”

This ‘mechanism’ is actually a telephone number plastered on the metro wall near the steps. Upon calling, a helping hand must appear to get the wheelchair-bound disabled person in and out the metro station. Nikita has tried it out in an inspection.

“It took thirty minutes for somebody to come.” Nikita says and explains how due to technical difficulties and inexperience, it took 40 minutes to get on the platform.

“It is working but it could be so much better.”

Nikita also emphasizes the need for a change in attitude. There is a circle that needs to be broken for a change to take place. The disabled are out there even if you cannot see them and they want to be part of the normal everyday life, not be left to their demise somewhere remote or unseen. The key to that is organizing events or occasions where the disabled could meet and integrate with the healthy just so

“…these two worlds can meet.”

A chance for understanding. Nikita talks of other occasions including “Accessible St. Petersburg” within which healthy ordinary folks drive through the town on wheelchairs to get a feel of how challenging it is to handle obstacles.

Obstacles and barriers also stretch to job opportunities for the disabled. Nikita works in a ‘virtual’ company. One of the upsides of working for the ‘virtual’ web developing company is that Nikita could do his job from anywhere, from his home perhaps. There are ‘company meetings’ where he attends and has his input and receives feedback on his job. However the truth is,

“The people with disabilities do not receive the same number of opportunities as the healthy people… definitely not.”

While getting a job is itself a challenging feat for the disabled, getting an education to actually qualify for a job is another ‘challenging’ story. Even if the disabled opt for remote education, they have to be physically present for the exams. This means tackling the old inaccessible university buildings and public transport.

Despite present shortcomings, progress is made one little step at a time. Nikita is hopeful that events hold to integrate the disabled into the society could serve to raise awareness, however little it might seem at first glance.

“Attitudes need to change.” Nikita emphasizes and describes his last ambitious project which includes developing a navigation application similar to the Google Maps but specifically designed for the disabled. Still in development, the app signifies the potential, all that could be done for the disabled because after all this is a story of hope; of a secret that was and now is no more.