The Committee visited the offices of Real, a disabled people’s organisation based in Tower Hamlets, on 15 September 2015. Before the Committee arrived, service users and those from Real’s partner organisations attended a briefing session explaining the Equality Act 2010 and answering any questions they had about the Committee and its inquiry. During the visit the Committee received a tour of the offices, heard from staff and met with a range of Real’s service users and partner organisations.
Mike Smith, the Chief Executive, explained that Real is a user-led organisation run and controlled by disabled people in the London Borough of Tower Hamlets: all of Real’s Board Members and 75% of front line staff are disabled people. He told the Committee that Real supports people with any type of impairment or disability, and from any ethnic, gender, sexual orientation, faith or age group. Support was offered in English, Bengali, Sylheti (a language originating from Bangladesh) and Somali by a diverse group of staff, providing important advantages for accessibility. Following the introduction, staff from four of Real’s key service areas gave the Committee an outline of their work.
Real had led a consortium of organisations to bid for the information, advice and advocacy contract with the local authority, including under the Care Act 2014. They were able to achieve this in part because Real happened to have significant in-house commercial expertise, and in part because the local authority had been willing to allow the partners the time needed to form the consortium. This was a front line service, with support available in person, by telephone and online.
The Committee heard from an individual advocate. He explained ‘advocacy’ as a form of supported decision making, whereby the advocate works with the person to look at the available options and their consequences. Advocacy needed to be tailored to the individual, and be able to respond to the cumulative impact of a range of causes of disadvantage. The aim was empowerment, enabling the person to make the decision rather than making it for them, and the ideal end of the advocacy relationship was that the person no longer needed support. The example was given of an individual in need of housing. The person had multiple needs, and multiple agencies were involved. This risked the client falling between the gaps, and brought significant communication challenges which the advocate was able to assist with—including communicating with the agencies when the client was unable to do so themselves because of their complex needs.
One of the direct payments workers explained that direct payments offered a means for disabled people to obtain care appropriate to their needs. The staff member gave the example of a man for whom inflexibility in his care arrangements prevented him from attending the Mosque on a Friday. He had used his direct payments to change the days on which care was provided and for a personal assistant to support him to attend the Mosque, allowing him to fulfil his religious duties and to feel a part of his local community.
‘Local Voices’ is a network of local disabled people, supported by Real but with their own identity. The member of staff supporting the network explained that it acted as a consultation group for the local authority in Tower Hamlets and other public bodies. An example of work undertaken was with the Docklands Light Railway. While the DLR described itself as fully accessible, local disabled people felt that this was not the case. Local Voices undertook a study and produced a report outlining the remaining problems, which were mainly signage, communications and attitudinal. The report was sent to TfL and, while the group reported that they were disappointed with an apparent lack of engagement from the DLR, they had observed that one or two of the recommendations were beginning to be implemented.
Following the tour, the Committee members took part in a series of small group discussions with local disabled people on topics that participants had decided they wanted to discuss with the Committee. The discussion in these working groups is summarised below.
Accessing employment was one of the biggest concerns amongst the individuals the Committee met at Real’s offices. Participants had a strong desire to work, and didn’t want to be in receipt of benefits. Some commented that they were well-educated, having attended university, and had experience. However, they felt they were denied the opportunity to work, both by employers and by job centres.
One participant acquired a disability whilst in employment, as a result of an accident. He described his employer as unhelpful, failing to put in place recommended adjustments and adaptations, and as preferring that he retire rather than return to work. He only discovered that he could have had access to an adviser once he had left the organisation. He felt that the assessments he did have focussed on his inability to carry out certain tasks, failing to acknowledge the tasks he could do in the workplace. Another participant described his employers’ lack of understanding regarding his disability, particularly a tendency to adopt a ‘one size fits all’ approach. Some thought that the concept of reasonable adjustment was too vague and open to interpretation, leading to differences in what the employer and employee/potential employee believed was ‘reasonable’. Some also felt that their need for reasonable adjustments might put them at a disadvantage during the selection process, making it difficult to decide whether to disclose their disability.
Poor treatment in job centres was a recurring theme. One participant commented that the job centre failed to acknowledge the impact of her disability. They had expected her to attend appointments and assessments in person which were either too far away to travel to, or that lacked flexibility when the impact of her disability meant that she was unable to attend. Participants felt there was a lack of understanding about disabilities which could be ‘hidden’ or not immediately obvious. Some felt that job centres were more about penalising job-seekers than helping them obtain employment.
Individuals spoke of many barriers to accessing goods and services. Local authorities, public services and private companies were criticised for a lack of understanding, communication and training, and for poor awareness of their responsibilities to provide adjustments. Several participants reported discriminatory, threatening or violent behaviour. Many felt that the court system could be a costly process with very little chance of a successful resolution, leaving them without any route for redress. The Equality Advisory Support Service was unknown to most of the group, and the few that knew about it said they would never have considered using it or know how to find the number.
The group agreed that there needed to be a greater understanding that being disabled was not synonymous with a wheelchair. One participant, who had restricted movement in their arms, had difficulty using telephone menus to speak to companies. Others spoke of the difficulties caused by companies relying on email and online services, which many did not have access to. Form filling was problematic for many, with help only available via expensive premium rate numbers. A member of staff at Real said that this issue could put time and financial strains on organisations like theirs, as people relied on them to help get past these barriers.
Although people felt that accessibility of transport in London was better than other areas, criticism was targeted at buses, taxis, the London Underground, and the DLR. On the underground, participants were angry that ‘improvements’ were being made at stations, and yet they still lacked step-free access—citing the examples of Shepherds Bush and Shadwell stations. The DLR was criticised for claiming to be entirely step-free—in practice access could be poor and one member of the group had broken two wheelchairs whilst using the line. Pushchairs taking up wheelchair spaces on buses was reported as a problem, as was bus drivers refusing access because their ramp was not working. On a more positive note, the group felt that taxi services had improved in London for disabled people, with direct discrimination from taxi drivers now less common.
Lack of adjustments, particularly steps and a lack of ramps, were considered a particular problem at restaurants and high street stores. Many had been told by shop staff that the council would not allow them to put a ramp outside, or that there was not enough space inside to accommodate one. One participant had taken this up with their local council, and found it not to have been true, leading to a feeling of having been discriminated against. Another participant told the group how a well-known coffee chain had removed their disabled toilet at his local shop as it was “underused”. For some, the lack of access to services such as banks and pharmacies had led to a lack of independence. One person described how they were served on the street with personal information being shared, because they could not get past the front step.
There was agreement amongst the group that universities, libraries (particularly their outreach services), and arts and culture sites were doing well, and participants used them regularly. There were also positive comments made about the work listed buildings were doing to allow better disabled access, despite the planning restrictions placed on them.
Experiences of reasonable adjustments in services were mixed. One participant gave the example of a shop where the security staff were happy to allow her to leave her personal trolley at the entrance, because she had difficulty manoeuvring it around the aisles alongside her shopping. On the other hand, when she used the disabled checkout to pay for her goods the shop assistant “looked me up and down and said ‘you’re not disabled’” because she was not in a wheelchair. Another participant had been refused a support person, because they had brought someone to help them in the past, and it was therefore expected that they would do so in the future.
Participants reported that people often made assumptions about whether or not they were ‘disabled enough’, including for those with physical disabilities that were not immediately visible. Some felt that there was a responsibility on a person whose disability was less obvious or less well known to inform people of their disability and needs. Others felt that this could be degrading, involving explaining intimate details like why they needed help going to the bathroom, or mean explaining things that to a disabled person were common sense.
It was agreed that some reasonable adjustments required more thought than others and could be about attitude, not just physical changes. The participant who shared her experience in the shop had insisted on talking to the manager, who had apologised but ‘backed off’ when she offered to help them access training.
Experiences in employment also varied, and the group felt that ‘employers are as varied as we are’. There were examples of good practice by employers in making adjustments, which could sometimes be as simple as leaving a window open during the day. One participant talked about a very good experience of reasonable adjustment for a mental health condition that required a lot of flexibility in her working days and hours. She felt, however, that she got the adjustments because she worked for a good practice employer and was able to articulate her needs. She was aware of others with mental health problems who had lost their jobs but been unable to explain what reasonable adjustments they would have needed. As with access to services, the group acknowledged that it might be necessary to explain things to employers, but felt that the idea of educating your employer could be a difficult one. Many people also found it difficult to be assertive with employers.
The group felt that recent changes to Access to Work were a problem, with people experiencing reduced support levels, and a perceived contradiction between Government messages on wanting disabled people to work and poor implementation of the reasonable adjustment duty in practice.
The most common way people found out about their rights was through word of mouth, and then they were only interested in knowing their rights when they encountered a problem. In the past people would have gone to the Citizens Advice Bureau, but cuts meant that this was no longer possible. People felt that they probably had more rights under the Equality Act than they had had under the Disability Discrimination Act, but that they knew less about them and so felt that they were worse off. The ‘ambiguity’ created by the title ‘Equality Act’ was considered to be part of the problem.
The group discussed when they would consider it necessary to assert their rights. Some felt that small incidents that occurred regularly could be ignored, while others felt that often small, repeated, problems could be highly significant and that ‘letting things slide’ could lead to problems escalating. Doing things through the legal system was too difficult and slow, and participants said that they would only try to do so for something very serious. Cuts in legal aid had also had an impact and people felt anxious about challenging service providers that they were reliant on.
A recurring theme during this discussion was that complaints procedures were often ineffective, drawn out over many years and months, with little or no action taken as a consequence. Such procedures were an additional burden on participants when facing the daily reality of their disability, and their ineffectiveness drove many to consider what they felt to be ‘drastic’ measures, such as self-funded legal action. Participants also wanted to see more action from the local authority to hold companies or organisations to account.
Most found it difficult to get things changed, often because they simply did not know who to go to. Many people just accepted what they were told by people in authority. The group felt that those who did not know enough to challenge, and were not expected to ‘fight back’, got the worst services—particularly those with lower education or poor English-language skills. People had been told that they should be grateful for the services they received, rather than that they had a right to them. Real had supported a service user threatening to disengage from services as a protest over the actions of his local authority, endangering himself. Following advice from Real he was able to complain effectively, including gaining help from his MP.
One participant described his continued efforts to ask a local confectionary shop to install a ramp. His request was repeatedly noted, although no action was taken. Another had complained to her social landlord regarding discriminatory, antisocial behaviour by her neighbours. After three years and no action she made provision to fund a court case herself. It was only after the threat of legal action that the landlord took action.
Some felt able to assert their rights—one participant had been a local government councillor, and so knew who to go to, and they knew him. However, even he reported that it would not have occurred to him to look for legal enforcement or to have asked for specialist advice from the Equality and Human Rights Commission. He also reported that while he found it easy to advocate for others, he found he needed the support of an advocate when he was complaining on his own behalf, as he would get too angry.