Living Independently and being included in the community

Living Independently and being included in the community

 In my first reading of the Rights of Persons with Disabilities Bill 2012, I was very glad to see it being included under the heading ‘Right to Live in the Community’ the words used in this section are very similar to what the CRPD says making it even better. Until yesterday when I was sitting and reading the Bill along with colleagues when we together looked at it trying to understand it more deeply and understand the changes it would bring to lives of disabled people.

The Bill recognizes the right of all persons with disabilities shall have the right to live in the community and have choices equal to others. I am assuming the choices means choices of places and living arrangements they can live in, but from the Bill it is not clear so as a non legal person I am not sure how the courts would interpret these choices as.

The bill puts a duty on the State to ensure that persons with disabilities are not forced to live in a particular arrangement; that the persons with disabilities must have access to community support services; and community services and facilities must be available to persons with disabilities. All these are very much needed  and must be provided, but there are some serious concerns looming in my mind that I would like to share. I am not a lawyer and hence not sure if they are legitimate.

As I see the Article 19 of the CRPD in the Indian context there seems to be a wide difference in what it means in urban and rural India. While in the urban areas it may for some persons with disabilities mean living with their family yet being able to exercise their autonomy while for some it may mean living outside their family setup with the support they require. I the rural setup where a lot of times there is a struggle to meet the bare minimum basic requirement, where rights have little meaning, for a disabled person it can often mean just being allowed to exist within their family setups. Considering 70% Indian population is in rural areas, it will be a pity if this extremely important section does not address their needs most explicitly and bring a positive change in their lives.

Right to live in the community and have choices equal to others

Having Access to an accessible home or shelter is one of the basic requirements to fulfil Article 19. That is the only way to provide those ‘choices’ the Bill promises in real terms. When I see this in the Indian context, I would not hesitate to say that we are far from having ‘choices equal to others’ but that doesn’t mean that we would never get their. Appropriate steps by the government in the right direction can definitely get us their someday.

 But today when I see the situation the basic need of accessible shelter is often denied to persons with disabilities. In Delhi I know of countless persons with disabilities who live in homes that are inaccessible and are often unable to even step out of homes living on upper floors without a lift. From my recent experience with home modifications for persons with disabilities in rural areas, it came as a surprise to me when parents and joint family members refused to allow modifications to be made to their house so that the resident with disabilities could have access just till the toilet and out of the house. They refused for modifications even if they were not going to bare the cost of modifications.

Homes are not public buildings hence not covered by the Bill. It is the parents or the family not agreeing to either shift to an accessible accommodation or make modifications; so what is the recourse for the persons with disabilities or for DPO’s  can take to enable these people with disabilities who are jailed in their own homes to realise their human rights?

·      Should the State not protect this basic right of the all persons with disabilities to have access to an accessible shelter/home even if it means ensuring that parents/families provide accessible living spaces?

·      Should the State not provide support to such families that need to shift or make modifications?

·      Should not all new public housing projects by default be universally designed?

·      Should not the right to rent accommodation by a persons with disabilities be protected and should not the persons with disabilities by allowed by the property owner to make reversible adaptations on their own cost?

These are just some questions that are in my mind based on my limited experience, I confess I have no idea of what Right to live in the community and have choices equal to others even mean in the context of persons with psychosocial disabilities and also Intellectual disabilities where being institutionalized. I am more cautioned in light of the probability that the Metal Health Care Act may be tabled for discussion in the winter session in spite of all our collective advocacy against it.

Access to community support services

It is good to see that the State has recognized the importance of community support services such as personal attendants to enable persons with disabilities to live independently and participate in the community. Again seeing it from an Indian context the way they are provided in rural and urban areas may greatly differ and would require a lot of debate and understanding of what are the community support services required for persons with different disabilities and what may be the mechanism to provide it based in the geographic and socio-economic backgrounds. Of course this can be postponed till the Bill becomes and act.

My thoughts right now are around whether ensuring access to community support services can be interpreted as State also providing financial support to those who may be eligible to avail of this community support and Subsidizing the cost of community support services?

Community services and facilities

The bill says “making community services and facilities for the general population available on an equal basis to persons with disabilities”

Again I am very happy that the State has recognized the importance of this aspect in being able to live independently but I am a little alerted by the use of the word ‘available’ and not ‘accessible’. In my opinion the two are very different and can take it from a right based to a medical model.

I am also concerned that there is a definition of services (which is very urban centric if I may say so) but there is no definition provided of facilities.

Again my concerns are around urban and rural differences and the need to ensure that clean drinking water points, sanitation even if it is shared and village roads, panchayat meeting places, local market, ration shop etc. must get adequate attention and be included as part of community services and facilities.

Lastly in the entire section in the bill why is the concept of ‘Living Independently’ been completely eliminated? As a layperson I am unable to comprehend the implications of it but as a disabled person I value the concept and would like it to be provided in the Act.

“Blatant violations of rights of passengers- meeting”

It was yesterday that I was retuning from Delhi to Hyderabad after attending a meeting chaired by the Joint Secretary Civil Aviation. The title of the meeting was “Blatant violations of rights of passengers- meeting” and the real agenda of the meeting is unknown to me but I believe after having attended it, that the agenda was to give patient one hour fifteen hearing to the disabled people to somewhere pacify the anger in the sector regarding denying air travel to Jeeja Ghosh very recently.

I came out of the meeting jubilated that we were heard. I must say did boost my hopes for a short while.

I took the last flight out of the Delhi airport to reach Hyderabad at 11:00pm. I waited patiently for my luggage that included my wheelchair to arrive when by about midnight the airline staff looked into my matter as I was the only person left. I was informed that my wheelchair and cushion was sent to Bangalore.

Exhausted after the long day my only reaction was to ask ‘now what?’ In high spirits the ground staff happily informed me that my wheelchair would be back by the first flight the next morning at 6:30am and delivered to me.

I couldn’t believe my ears and eyes. On one hand in reaction to his perkiness my rightful response should have been of illation and appreciation, but on the other hand the words I was hearing were unbelievable. The thing is my wheelchair can be equated to my legs, I cannot move without my wheelchair.

I tried explaining this to ground staff, for whom my wheelchair was equal to a suitcase or a bag. Without any apologies he with a straight face said that they couldn’t do anything now. I asked him to talk to his assistant manager. He too said there was nothing they could do.

Our argument could have continued all night without resolution, but something made me ask him for a written statement saying they couldn’t do anything to help me. Instantly he called his asst. manager again who in turn called the manager who finally said that I could carry one of their dilapidated wheelchair home with me and return it the next day after my wheelchair was returned. 

It was 1 am by now. Tired I didn’t want to discuss anything more and left leaving their wheelchair behind because I am one of the few lucky people who have a standby wheelchair at home.

Since then I cannot but help rethink about the pacifying meeting we had yesterday with the Joint Secretary. At the meeting there were no solid actionable points decided on. Throughout there was flagging of issues we voiced and saying that they would look into the matter. There was a talk of forming a small committee to work on the issue without clarity of any timeframes.  When asked specifically about what action would be taken against Spice Jet in Jeeja’s case the JS very vehemently said that he did not want to talk about it in ‘public’. Here I was feeling stupid, thinking that we had gone to discuss the Blatant Violations of rights of passengers.

I apologies if some feel that I am being pessimistic but really I am confused about what the real outcome of the meeting was. My pessimism is based on past experience when in 2008 after several meeting with the Director General Civil Aviation the Civil Aviation Requirement on carriage of disabled people was enacted…yet four year later almost everyday disabled people are being discriminated.

My only hope this time is that we shouldn’t be so excitement about getting a patient hearing from the Ministry of Civil Aviation.  We need to stop congratulating ourselves and realize we still have no idea yet if action will be taken against the airlines for discrimination. Our hands are still empty and nothing has changed or expected to change in the near future.  


Shivani Gupta 
Director AccessAbility

Impact on Airlines of the DGCA CAR Section - 3, Series - M, Part – 1

Civil Aviation Requirements on Carriage of disabled passengers - Its rightful Impact on the airlines

NON DISCRIMINATION

Airlines can NOT

·       Refuse to carry unescorted disabled passengers or their mobility aids and devices, even if they do not hold any disability certificate.

·       Require Medical clearance or special indemnity forms from persons with disabilities.

·       Require a disabled passenger to provide additional information once the ticket has been confirmed. In case of online booking, all requisite information regarding specific needs of the passengers must be collected during the online booking process.

·       Limit the numbers or types of disabled passengers on their flights.

·       Refuse to engage in Interline transactions for carriage of disabled passengers, or to commence/continue interline transportation of such passengers.

PROVISION OF ASSISTANCE

Airlines MUST

·       Provide necessary assistance to persons with disabilities who wish to travel alone without an escort.

·       Provide seamless assistance from the departing airport terminal to the destination airport terminal.

·       Provide individual briefing on emergency procedures, cabin layout and the available specialised equipment to disabled passengers and their escorts.

·       Provide appropriate in-flight support including assisting passengers with impaired mobility to get to the onboard toilet.

ENSURING APPROPRIATE STAFF TRAINING

Airlines MUST ENSURE that

·       Staff assigned to handling disabled passengers, example Cabin Crew/Commercial Staff including Floor Walkers and Counter Staff etc., MUST be trained in:

o   Disability Awareness,

o   Assisting persons with reduced mobility (on-ground and during embarkation), and

o   Assisting Unaccompanied Passengers with Disabilities (In-flight).

·       Appropriate Training is provided to the loader staff to ensure proper storage and handling of mobility equipment.

·       Staff Training for assisting emergency evacuation of disabled passengers.

PROVISION OF REQUISITE EQUIPMENT

Airlines MUST ENSURE

·       Availability of wheelchairs at all stations without any extra charge.

·       Availability of boarding/alighting devices (such as ambulifts, aisle chairs etc.) and low floored accessible buses without any extra charge to the passengers.

·       Provision of narrow onboard wheelchairs to enable passengers with reduced mobility to access lavatory facilities.

·       In-flight availability of information in accessible formats such as Braille, Large Print etc.

ADAPTING POLICIES, PROCEDURES AND PRACTICES

Airlines MUST

·       Formulate and publish detailed procedures for:

o   Carriage of disabled persons,

o   Emergency evacuation of disabled passengers, and

o   Carriage of Service Dogs in Cabin.

o   Medical Clearances.

·      Ensure that when overnight accommodation is offered, e.g. during forced overnight halt, or when offloaded, Wheelchair users SHOULD be allocated accessible accommodation.

Complied by Shivani Gupta, Director AccessAbility

Indian Railways for the disabled

It was going to be a train trip for me soon after a long time. I was traveling to Puttaparthi by Karnataka Express for darashan of Sri Satya Sai Baba along with my father who is a staunch devotee.  For a number of people train travels were something to look forward to and enjoyable. In fact they were enjoyable for me to till I became severely disabled having to use a wheelchair. Since I became disabled I tried to avoid train travels as much as possible but considering that it was the most affordable means of travel I was forced to use it on occasions.

My father made the bookings well in advance. The railways gave a considerably large concession on the ticket for the disabled traveller and one escort traveling with them making the travel very cheap. We had heard about a ‘Handicapped Coach’ that the railways had introduced in every train. But it was an unreserved coach so a disabled passenger could not reserve it and as a matter of safety and convenience a disabled person would rarely travels unreserved, therefore this coach was useless for us as it still remains to be for most disabled travellers.

Coach for disabled about 2 feet high and a feet away
from the platform without a ramp

I was happy for not having access to this ‘Handicapped Coach’ that the Railways had so generously provided. Firstly the coach was a second-class coach and considering in the scorching heat in May we were going to travel air-conditioned. Secondly the design of the coach was not exceptionally accessible – boarding the train was still going to be difficult and using the toilet was still going to be impossible. The most important reason why I was happy not using this ‘special’ facility was because I did not want to be singled out along with my family and placed separately. I found the entire concept discriminatory. In my mind it was like the British Raj where Indians were not allowed in the same compartment as the British, here the disabled travellers being same as the Indians.

State of the toilet in the coach for disabled people

One of the main preparations for me before a train travel apart from packing was organise my bladder and bowel as the toilets in the train are inaccessible to a disabled person like me. Just because the Railways have designed their coaches to be so inaccessible to the disabled most people with disabilities are faced with this challenge. Considering it was a two-day journey, I needed to stop my intake of food and liquids nearly two days before commencing the journey. It is not easy to do so because as dehydration sets in one begins to feel weak. Needless to say I needed to keep the intake to bare minimum throughout the journey.

Overflowing drinking water facility

This I must point out is just the beginning of the difficulties to travel be train. The Railways is proud of making its large stations accessible to disabled people, but here again there is much to be done. During a visit to the New and Old Delhi railway stations recently, I was amazed at the bizarre on ground implementation of these access features. The low drinking water sink was blocked and overflowing with water. The accessible restroom was located in the ladies waiting room making me wonder where a disabled man was supposed to go.  As for the condition of the special waiting room the lesser said the better.

crossing over tracks

In this entire thread of thought while making stations more disabled friendly there is no concern for the safety of disabled passengers. The basic issue of inter-platform transfer seems to have been entirely ignored. For instance, whenever I’ve travelled by train, I have always been taken as luggage over the railway tracks by a coolie, putting me as a passenger at a higher risk of accidents than anybody else. What disheartens me most is when I often read in news papers that the Railways in its understanding is sanctioning money to install escalators in various stations for the benefit of disabled people while it’s a internationally recognised norm that people using wheelchairs are not allowed to use escalators. A rule followed by the Delhi Metro and the Airports in India but happily ignored by the Railways. This again is an indication towards poor safety concern for the disabled.

The anxiety of travel does not subside even after reaching the platform well in time to board the train. The coolies that was hired to bring me over the tracks till the platform was engaged on the condition that he was going to board me in the train and leave me on my berth. Of course the cost of this is high therefore as a disabled traveller while the railways was generous in its concessions but because of inaccessibility the added cost to hire two coolies to board and de-board me compensates for the concession availed.

Once the train arrived and the initial frenzy subsided two coolies lift me like a sack of potatoes (one grabbing me from under my shoulders and the other from under my knees) and carry me in. There is no point in my feeling awkward or angry at the way I am physically handled as there are no other options in any case.  Train is about 50 cm higher from the platform and carrying me up is difficult, but the real challenge is taking me in through the extra narrow and extra heavy door of the air-conditioned compartment. There is a jam caused my getting in blocking the way for the rest.  In between all the confusion that is created the coolies struggle to squeeze in in through the door. There are always a few scratches or red finger marks of the coolies hand that remain as a memory of this experience. I take a deep breath of relief as I settle on my berth finally. One third of the journey is completed for me at that moment.

As the train rolls forward I stay happily perched on my berth enjoying the scenery outside as feeling bad about the way I am treated as a disabled person is of no use as in so many years of being disabled I have reconciled to this differential treatment, it is not something specific only to the railways in any case. My berth was my spot for the next two days as I am going to be able to get down for some fresh air at any of the stations neither was I going to be able to access the sink or the toilet. With a restricted intake there was nothing more that I could do to avert something as natural as natures call. All I hoped for now was for an eventless journey.

As the train jolted to a halt at the Puttaparti Station where the stop was just for a couple of minutes, my father was already at the compartment door trying to hail to coolies to help us out. He had already spoken to the ticket conductor explaining him our problem in de-boarding the train and requesting him to ensure that the train didn’t move ahead without letting us off. The TC assured him and told him not to worry and get of comfortably. In spite of hurrying frantically to expedite our de-boarding, the train jolted ahead with me in the hands of two coolies with one of them on the platform and the other still in the train. I thought this was the end of me but my father ran forward and grab me and put me on the platform. From the moving train the coolies unloaded my wheelchair and other luggage, it was clear that the TC had not bothered to ensure my safety as he had promised to.

This was a journey that is etched in my mind forever. Today as I have become older and broader physically I know that there is no way I can make a train journey ever again. The only mode of travel available to me is to travel by air. Since it is not something that is very affordable to me I am very restricted in my travel not able to take as may holidays I would like to.  I am discriminated and excluded because of only one reason and that reason is ‘inaccessibility’. As a disabled person only the more expensive services are accessible to me such as air travel instead of rail travel, using taxis instead of public transport, five star hotels instead of cheaper guest houses. It is as though I am being charged a tax for being disabled!

The concession provided by the railways is useless unless they provide accessibility and providing accessibility is not rocket science, it only required that the railways consider inclusion, safety and comfort of disabled travellers as one of their main objectives and then work towards it in a phased and an inclusive manner. It is not charity that a disabled person needs in the form of concessions rather we want inclusion and the right to use the service with the same dignity and convenience as anybody else.